Ava is just beautiful.
I can send you a copy of the clip of the Fox news on the research at Stanford if you email me.
Elizabeth is a type 1 and has been in the study since she was almost 9 months. She is 2 years old and 9 months and quite the miracle.
Jeanna, thanks for the offer of the clip! You can send it to this email address. We read your site about Elizabeth and she’s simply a miracle child. You’re also a miracle family with the awesome care you’ve provided her! We wish your family and Elizabeth all the best and hope one day the researchers will find a cure for all of us.
We just wanted to say hey and let you know that we’re thinking about you every day!! Thanks for setting up this website to keep us all posted on any progress – we check for updates every day! I can only second Anja’s earlier post – Ava is very lucky to have such wonderful parents! Let us know if there is anything we can do to help!
Thinking about you and sending lots of positive vibes your way!
Anke, Dave and Emily
Anke and Dave, thanks for the good vibes. Every little bit helps.
Today we went to Children’s Hospital to find out if we could get a particular drug treatment and were successful! Our neurologist there agreed to perform the treatment, but we’ll post more on the whole thing later. Suffice it to say it’s given us alot of hope. Not a guarantee by any means, but hope.
Hopefully little Emily is doing well. She’s a real cutie!
Until later, take care! Hopefully we’ll get to see you guys soon.
Anja, it was lovely talking to you last night. After our long conversation, I just had to come here and see who we were talking about. Ava is gorgeous! If there is anything else you need, or if you just want to chat, feel free to give me a call any time.
Hi Randy & Anya,
Just wanted to let you know we are thinking about you and praying for you, we don’t want to bother you but are checking the website frequently.Kaleigh & Emma send their love to Ava and would love to see her.I still have her picture on my cellphone-what a little angel,such big smiles!!
Sorry for taking so long to reply. Thanks to all of you for the kind thoughts and prayers.
As you can imagine, it’s been a rough month and Ava’s first birthday is going to be a VERY HAPPY milestone for us later in July.
We’re praying and hoping that we’ll have many more years with our baby, and that God and/or the scientists He created, will one day deliver us the cure.
Randy & Anja: We read Ava’s website everyday. We are so proud of both of you in your dedication,determination,and resourcefulness and love in ava’s situation.Grandpa & Nonna love you both and extend our strength to you.We wish we could take your pain away and put it on us.Our granddaughter is the love of our life and nothing including any illness will cause us to waiver from this love.We thank you for allowing us to be part of Ava’s and your lives and struggles.We do wish that you would replace the word “Hope” with “Faith” in your comments about Ava, as we know that our Faith in God’s being there to help Ava will never falter.
Thanks Mom and Dad! We know you guys are with us; you were so much a part of Ava’s life when she was born, and then you were here for us when she was diagnosed.
And both times it was a blessing to have you guys here. Thanks and love you so much!
Dear Randy and Anja
A. J. is my insurance agent and if we dig further enough back, we might find that our great grandfather and your great great grandfather were brothers. Ava and you all are in our prayers. We have put Ava on the prayer line at Immanuel Baptist Church and will check the website or check with A.J. God is in control and miracles happen all the time. We have a friend that had a double lung tansplant 3 years ago and never had a problem. God lifted her up, so we know HE is still in the miracle business.
Hi Bobbie and Nelda, it’s good to hear from (distant) cousins! We really appreciate you putting Ava on the prayer list at Immanuel. And your testimony about your friend gives us hope! Take care,
Hi Helga! Thanks for the kind words and for dropping by the other day to help out w/Ava. You’ve been there from the start (feeding a hungry father to be!) and we REALLY appreciate it. We’ll see you later!
Hi Randy and Anja,
Last night, Extreme Makeover Home Edition featured a Boston family with a child with SMA. The show did a great job promoting finding a cure for SMA. I hope you caught it! Here’s more information: http://abc.go.com/primetime/xtremehome/bios/310.html
Lori, that’s awesome news. Thanks for the tip. We unfortunately didn’t get a chance to see it, but just knowing that ABC created awareness of the disease is heartening. Thanks for the extra info!
Dear Ava,
Just wanted to wish you a Happy Belated Birthday, beautiful! Never have I met such a sweet, happy baby. I hope you have a lifetime of happy birthdays. You are blessed to have such wonderful, devoted parents, grandparents and family.
Love,
Denise
You are so beautiful! I saw your picture of FSMA and found your website through there. My name is MJ and I am 18 years old and have SMA like you do. I live in New York but am moving to Ohio in a few weeks to go to college. I would love to send you a blanket from my organization, B4SMA. I send blankets to kids with SMA. I look forward to hearing from you. Love and blanket hugs, MJ
I talked to Ava today and she said to me, “What’s up with that?” Truly amazing. She is beautiful, smart, funny and full of energy. Thanks for letting me spend some time with her. Oh yeah, she also told me she’s a big EAGLES fan! Imagine that. As always, if you need anything, just tell me. You don’t need to ask.
I had a wonderful evening yesterday with Ava and Grandmom (Anja too). Anna, Anja and I stopped by and got to see Ava put on a wild display of singing and noise making. I drank some good coffee, Baton Rouge style. Ava answers the telephone as quickly as her mother, and sings along with the video. I think her eyes are getting bigger everyday! Even when she fusses, she is a cutie. When she gets a little bigger, my Anna can teach her to make cheese omelets. Ava continues to amaze me with her energy and increased vocabulary. Thanks again for letting us be a part of her growing up.
Ava is the biggest cutie! At one year old she’s smarter than all of my friends put together. I asked her to and she says that the Redskins are “BADDDDD” she also says E..A..G..L..E..S EAGLES!! She could be a cheerleader. She knows how to dance and sing.
I am a long-time client of the McLin Agency. Your family has been more like good friends than business associates, and when Mr. McLin told me today of your struggles, I felt your pain. I will be praying for you all. I know the Lord hears and answers prayers, and that He is aware of your needs. Never forget that. He knows you by name and will not forsake you. I have great faith that He will not give you more than you are able to endure, although sometimes it seems that way.
I must agree with Grandpa’s description of Ava – she is absolutely beautiful!!!
Grandpa & Nonna gave me a picture of you to put in my purse.
I really do love you and wish we could play together. My mommy & daddy and my big sisters Kelsey & Alicen love you too and have a picture of you to show everyone how beautiful you are. We pray for you all the time.
Jesus loves you & me!
Cast you cares upon the Lord.Believe in the word of God.
My prayers are with you and and your family.
Sometimes its hard and sometimes you might not know what to say to Jesus but,when you dont know what else to say just say the name of Jesus.
He hears your cries.
May you be with God in your time. God is always with you.
My name is Aileen, and I am a friend of AJ and Patricia. I heard about baby Ava, and seen pictures of her. She’s one cute baby! I just wanted you guys to know that I am praying and thinking about Ava, and I hope that she gets well soon. I’m not very good with words, but I just wanted to let you guys know that I care, and I’m sending my prayers on over there! Keep your chins up! I know in my heart that things will turn out okay, because Ava is such a strong, beautiful baby. Have a great week, don’t forget to smile, and give Ava kisses for me!!
The Red Stick Kiwanis Club of Baton Rouge,Louisiana ,board of directors have voted to make a donation of $1000 to the Ava McLin Fund.Secretary Phil Divincenti of the club has been extremely active in getting this donation request to the Board.Jacques Villaume a board director brought the issued up before the 10/11/2006 meeting and he made the motion to contribute this money. Red Stick Kiwanis club members work hard on different projects to raise monies for worthy causes such as Ava’s. All these members do this on a volunteer basis. Congratulations to all these men and woment in this club.A real salute for them.
I was just thinking about Ava. Hope you all are well and have great Thanksgiving!! We all have a lot to be thankful for!! If you need anything just let me know!!
Hugs,
Jeanna
Sorry for the late reply, Aileen and Jeanna. We’ve been REAL busy lately lining up treatments and equipment for Ava and are just getting a breather, so to speak.
Ava is doing well right now. She’s eating and sleeping fine and seems to be tolerating her Hydroxyurea treatment fairly well. Her bi-weekly blood tests indicate the Hydroxyurea is not affecting her white blood cell counts too much to be worried about, and Anja and I can see some strengthening in her arms and legs.
We’ll try to get more information up sometime soon. Overall, she’s doing well right now and we’re praying her treatments will keep her strong and healthy.
ich schreibe bewusst auf deutsch – das sollst du ja schliesslich auch mal lernen…:-) Tolle homepage! ich finde dich sooooo suess, dass ich dich auffressen koennte! schade, dass du nicht in deutschland wohnst, dann koennte ich dich mal persoenlich kennenlernen!
Hi Randy and Anja, We just wanted to let you know we were thingking of you and Ava. We are from Louisiana and are friends of your mom and dad (Randy). I (Krystal) think I met ya’ll once at their new house in Denahm Springs. I was there neighbor when they lived in the KOA campground. I still talk to your parents from time to time and try to go and see them when I can. I am the one who is in Vet School at LSU. Well we are praying for Ava and all of your family.
Hi McLin Clan,
Katja forwarded me the website featuring Ava and her new wheelchair! She’s really zipping around quite well! I hope she doesn’t speed like mommy! The Panthera model seems very lightweight and mobile. God bless you guys and hope to see you all soon.
I work with Fight SMA and stumbled across your blog. Very well done!!! You should take a look at the video I posted the other day on the Fight SMA blog (link to blog: http://www.fightsma.org/blog/). It was produced for an event in Atlanta recently. It introduces a bunch of SMA kids in our Atlanta chapter. They’re great kids and it’s an outstanding video.
By the way (didn’t know where else to ask this) would you mind switching our link from fightsma.com to fightsma.org? We’re using .org now.
Hi Randy and Anja and Ava. Spoke with Pat this week and she told me about your need for laminate floors to make it easier for little Ava to get around. You know if we can be of any help in this matter please call, even if it might be just for installation advice. Ava is darling and I know she is a brave little girl and I also know that God takes special care of special children like Ave and my Anna. (Phone edited to protect privacy – Randy).
I enjoyed taking Ava and you to the Shriners Hospital yesterday. Ava seemed to enjoy the ride even though we were stuck in traffic for hours. Best wishes to you all.
Thank you very much for taking us to Philadelphia to Shriners Hospital last Friday. We were lucky to have had the pleasure of riding with such two nice gentlemen like you and Mike.
Your company took the edge of the usually dread I feel when taking my bright and happy baby to the hospital to see what functions she has lost or will loose next.
We are looking forward to the Easter Bunny at Shriners. Thanks for the invite.
First of all, my name is Ashley and I’m Darrell and Pam David’s daughter. We’re dear friends with Mr. A.J. and Mrs. Pat. I’m sure if you seen a picture of us, you’d remember us. I’m probably all grown up since the last time you’ve seen me. I went over to your parents house last week and they told me to check out the website. She is an angel. She is SOOOOOOOO beautiful. I pray my child is as beautiful as she is. You two are very strong parents and I know you’ll do a wonderful job raising Ava. I love the wheelchair. I bet she can’t wait to move all over the house. Take care and ya’ll are in my prayers.
Hey Ava!
I just wanted to wish you a HOPPY, HOPPY EASTER! I’m
sending you an Easter goodie box and I hope you have as much fun with it as I did picking it up for you! My big sisters Kelsey & Alicen send hugs and kisses to you along with my Mommy & Daddy. We hope to see you soon! I hope the Easter bunny brings you lots of yummy treats! I Love you,
Sarah Grace
It’s me … Steve from Fight SMA again. I had something I wanted to share with you, but I didn’t know a better way to contact you. I thought you might be mildly interested to hear that Fight SMA has published its very first PODCAST! This one is an interview with Natasha Wood, who has SMA Type 2 and is performing in a one woman autobiographical show in California.
Randy,
Your dad and I graduated from Istrouma together. He makes me buy insurance from him although he never gives me a cup of coffee when I go to his office to pay his exorbitant charges. Pat, however, is a gracious Southern lady and makes up for A J’s troglodyte manners.
I pray for Ava everyday and will continue to do so.
Blessings,
Bobby
Hey there! I am on SMA Support chat, and just got the chance to look at little Ava’s website. It is totally cute! Do you keep it up, or your husband, or what? Anyways, we live in Richmond VA, like 2 hours from you — we would love to meet you. I have a little girl, Taylor, who is 21 months and type II SMA. If you are interested, that would be really cool. I’m also interested in figuring out how you get people to “Shop for Ava”. Please email me back and let me know if you want to get together… how you “shop for Ava” info would be greatly appreciated as well! Take care!
Hi Visha, this is Randy writing. Nice to hear from you! You can send Anja email at anja***@mclin.org (remove the three stars ***. I put them in to keep the email address from being harvested). We’ve got some friends staying with us this week, but she should be able to get back to you in a few days. Take care! We can also chat later about the “Shop for Ava” also.
Ava, Anja and Randy,
God bless Ava. She is such a cutie!!! When I held her in my arms the first time ever, at the Austrian Restaurant in Reston, I fell immediately in love with her!!! Big wise eyes, bigger smile.
This is my first enry into this guestbook but not my first visit.
I came back from 7 month in Wedel/Hamburg, Germany. My mother and brother where not well.. are now oaky….thanks to prayers , they help and heal, I know!!!and the doctors.
I am here for a while in VA, if you need help call me, e-mail me
Hello, you do not know me but I wanted to let you know that Ava is on my prayer list. There are more than 40 different muscular dystrophy diseases that people suffer from. I have one of the rare ones, and fortunately I do not need a wheel chair. I can not imagine what it must be like for little Ava, she must be a very strong little girl. God is with you all through this difficult journey. I pray that she will be healed.
Tonya, thank you so much for the kind words and prayers. What Ava lacks in muscle strength, she makes up for in spirit. I’m sorry to hear about your own fight with MD, it’s a very tough battle for everyone involved. God bless you for caring enough to write and pray!
Inge, we’re very happy to hear from you again! Anja said she will (or has?) called you already. Take care and God bless!
Ava, Nonna and Papa miss you so much, and I just wanted to let you know Papa is getting stronger each day. We might not be there for Christmas, Dollbaby, but we hope to be there soon after Santa visits you. We cannot wait to hold and hug you
and get all of your sugar. We pray for you always and know you have the best Mommie and Daddy to take care of you and who love you so much. Nonna and Papa
love you with all their hearts.
you guys are so special!! thank you for keeping us posted on all the wonderful things your family is up to!! Question: why is your new dog named Miss Lily ??? I love this site and will keep visiting it!! Anya, did you make the flan yet???? kisses and hugs for Ava
I had so much fun being with the three of you at Our Lady of Lourdes Grotto yesterday. What a memory to be there since tomorrow is the 150th anniversary of Our Lady appearing to St. Bernadette and declaring “I am the Immaculate Conception”. We continue to ask for Our Blessed Mother’s intercession with our prayer requests.
What a sweet, beautiful little girl she is. Passersby thought it was cute that, since it was cold, Ava wore my adult gloves. Lunch at the Cozy Restaurant was tasty. I continue to lift you all in prayer. I know the Lord has His special plan for her. You’re so special to all of us!!
Gerade habe ich mich mal wieder auf Avas Seite umgesehen und bin vorallem bei den Videos hängen geblieben.
Es ist kaum zu glauben, aber Denise und Ava sind sich sehr ähnlich, bzw. sah ich im kleinen Schieberolli meine Denise sitzen. Die Bewegungen, die piepsige Stimme, die Fröhlichkeit, ja selbst Haarpracht …ich war super erstaunt gerade. Kaum zu fassen, wie manche Kinder sich doch auf eine gewisse Art und Weise ähneln.
Ich wünsch euch alles liebe und man liest sich hoffentlich im SMA-Forum wieder.
Grüße aus dem nasskalten Deutschland.
Bianca mit Denise und Familie
Your Mom gave me the web site on Ava months ago and I misplaced it. I just found it and have been reading for an hour on your beautiful Ava. She is a blessing from God and your journey through this trial will bless you and Anya a million times over. This makes me treasure the health of my one year old grandbaby, Hanna Grace. Ashley and her live in Florida. My thoughts and prayers are with you all, and like your Mom, Dad and brother, you will always hold a special place in my heart.
Hey McLin family — we live up the road from you in MD and I’ve been reading your blog for a while and browsing any pictures you guys put up. Ava’s a pretty little girl and I’ve enjoyed catching up on her story as you post! Anyway, we are an SMA family as well and share in your joys.
Peace <
Nate, Diana, Annabelle, (Linnea), and Emily
wie ich gehsehen hane hat deine suße tochter endlich denn rollstuhl bekommen wo du schn so lange gewartest hast und fahren kann sie auch schon ich wünsche dir un deiner fam alles gute ein küsschen an eva
lieben gruß andi und pati
hello.
very nice website you have and and a very sweet daughter.
I live in Sweden with a wife and two children.
Both my children have SMA. They are three and four years old, a boy and a girl.
Glad to see you in the U.S. use wheelchairs from Swedish companies. both Panthera and Permobil builds very good things. I just wanted to say hi. Hope you understand my poor English:)
hook me up on myspace.
take care / tobi
I just watched a youtube video of Ava in a R82/Snugseat Stander with the Vibration attachment. I have read that more than 10 minutes a day can cause damage to bones and muscle and wonder why you choose to do it for 1-2 hrs/day. Or do you disconnectr after 10 minutes? Also, I have been told thatthe vibration will ruin the stander over time. Have you found that to be true? I also wonder why here right heel is up in the air. I have seen protocols where the feet are on the floor or on the platform so you vibrate the long bones first, have you seen a researcgh study do it the way you are doing it? I have wanted to so it your way buy was told not to, so please help me understand! I use the platfrom on the floor and stand the kids in a Rifton gait trainer.
Ava, you are absolutely gorgeous, and I can’t believe how much you have grown. You have the same powerchair as Autumn (except hers is blue), and hope you love getting around as much as she does. Anya and Randy, I bet you cried so much when that powerchair finally came. We got ours EXACTLY one year after her diagnosis, and I cried all day–I was so happy that technology was able to give a little something back that SMA took away.
Anyway, we all wish you much love and continued good health.
Hugs to all,
Wendy, Autumn, and the rest of the Persingers
Hallo Anja, hallo Ava, hallo Randy,
ganz liebe Grüße aus München.
Google sei Dank hab ich Euch gefunden, da unsere Kontaktdaten wohl nicht mehr aktuell sind.
Wir freuen uns, von Euch zu hören und wünschen Euch und vor allem Ava alles alles Gute.
Andreas (und natürlich auch Tania, Maxi und Flori)
Our daughter Gabriella was diagnosed with SMA at 11 months. She is now 18 and finishing up her senior year in High School.
We have had many good experiences and have learned about medical issues and treatments as well as the most practical types of equipment.
Early in her young life we had many issues with RSV and pneumonia but as she grew older and due to us using the best medical equipment at home, she has not been hospitalized in 7 years. As she has grown she has been more resistant colds, flu’s, RSV and pneumonia.
We would like to be of help in anyway we can. By the way, I did not see any mention of MDA. If there has been something that has been one of the best activities for Gabriella, it was attending MDA Camp. She attended every year starting at 6 years old. Please feel free to email or contact me or my wife or even speak with Gabriella. I have logged in using my email address but just incase it is trecognitiong@aol.com. I will include a video link of Gabriella that was shown on the local news promoting MDA Camp. http://www.ksdk.com/news/difference/story.aspx?storyid=153307&catid=88 also her is an article link: http://www.ksdk.com/news/local/story.aspx?storyid=128276
Hello Anja, hello Ava, hello Randy,
We come from Greece and our names are..Fontas (dad), Maria (mum) and Anna our little 3.5 years old daughter.
We sent you our love and support!!!
Anna also diagnosed with SMA II , when she was 11 months old.
Your videos, your information, and everything you have in your website are amazing!!!!
You help us so much with the equipment!!!
Ava looks so nice and beautiful!!!
Last videos with her new stander are AMAZING!!!
If you dont mind we would like some information about the stander..please e-mail us about it if you want!
Many thanks
Give our regards to Ava, she hold a special place in our hearts!!!!!!!!
Ava,
Thank you for comming to fairfax county fire station 40 for the MDA kickoff event. It was so nice to meet you and show you the fire truck and the fire station.
When Im out collecting for MDA next week Ill think of you and your family. Maybe nextime you come by Ill have a better magic trick.
your new friend
Fireman Mitch
Hi Rajesh! Nice to hear from you and thanks for dropping by Ava’s site. I’m going to be in training for a month, but should be available again mid-November. Maybe we can get the families together then. Take care, Randy
I hope you are doing fine. You visited me some time ago with in Egelsbach near frankfurt because of the Swivel Walker. Please be so kind to provide me with a personal e-mail and phone no. so that I can contact you about the very nice video in You tube.
I look forward to talk to you soon Kind regards
Benedikt Preisler
1July 1st, 2006 at 4:01 pm
Ava is just beautiful.
I can send you a copy of the clip of the Fox news on the research at Stanford if you email me.
Elizabeth is a type 1 and has been in the study since she was almost 9 months. She is 2 years old and 9 months and quite the miracle.
2July 3rd, 2006 at 8:09 pm
Jeanna, thanks for the offer of the clip! You can send it to this email address. We read your site about Elizabeth and she’s simply a miracle child. You’re also a miracle family with the awesome care you’ve provided her! We wish your family and Elizabeth all the best and hope one day the researchers will find a cure for all of us.
3July 6th, 2006 at 8:42 am
Randy, Anja and Ava –
We just wanted to say hey and let you know that we’re thinking about you every day!! Thanks for setting up this website to keep us all posted on any progress – we check for updates every day! I can only second Anja’s earlier post – Ava is very lucky to have such wonderful parents! Let us know if there is anything we can do to help!
Thinking about you and sending lots of positive vibes your way!
Anke, Dave and Emily
4July 7th, 2006 at 9:28 pm
Anke and Dave, thanks for the good vibes. Every little bit helps.
Today we went to Children’s Hospital to find out if we could get a particular drug treatment and were successful! Our neurologist there agreed to perform the treatment, but we’ll post more on the whole thing later. Suffice it to say it’s given us alot of hope. Not a guarantee by any means, but hope.
Hopefully little Emily is doing well. She’s a real cutie!
Until later, take care! Hopefully we’ll get to see you guys soon.
Anja and Randy
5July 13th, 2006 at 6:49 pm
Anja, it was lovely talking to you last night. After our long conversation, I just had to come here and see who we were talking about. Ava is gorgeous! If there is anything else you need, or if you just want to chat, feel free to give me a call any time.
6July 19th, 2006 at 7:59 pm
Hi Randy & Anya,
Just wanted to let you know we are thinking about you and praying for you, we don’t want to bother you but are checking the website frequently.Kaleigh & Emma send their love to Ava and would love to see her.I still have her picture on my cellphone-what a little angel,such big smiles!!
With Love,
Paul,Wendy & girls
7July 20th, 2006 at 11:39 am
Hi Andrea, Wendy and Kathy,
Sorry for taking so long to reply. Thanks to all of you for the kind thoughts and prayers.
As you can imagine, it’s been a rough month and Ava’s first birthday is going to be a VERY HAPPY milestone for us later in July.
We’re praying and hoping that we’ll have many more years with our baby, and that God and/or the scientists He created, will one day deliver us the cure.
Take care and thanks again,
Anja and Randy
8July 20th, 2006 at 11:50 am
Randy & Anja: We read Ava’s website everyday. We are so proud of both of you in your dedication,determination,and resourcefulness and love in ava’s situation.Grandpa & Nonna love you both and extend our strength to you.We wish we could take your pain away and put it on us.Our granddaughter is the love of our life and nothing including any illness will cause us to waiver from this love.We thank you for allowing us to be part of Ava’s and your lives and struggles.We do wish that you would replace the word “Hope” with “Faith” in your comments about Ava, as we know that our Faith in God’s being there to help Ava will never falter.
Love: Pappa,Momma,Grandpa & Nonna McLin
9July 20th, 2006 at 2:10 pm
Thanks Mom and Dad! We know you guys are with us; you were so much a part of Ava’s life when she was born, and then you were here for us when she was diagnosed.
And both times it was a blessing to have you guys here. Thanks and love you so much!
10July 21st, 2006 at 9:35 am
I feel blessed to have such resourceful and caring neighbors. Sharing Ava’s journey with others takes courage, trust and love. I am learning………..
11July 23rd, 2006 at 10:46 pm
Dear Randy and Anja
A. J. is my insurance agent and if we dig further enough back, we might find that our great grandfather and your great great grandfather were brothers. Ava and you all are in our prayers. We have put Ava on the prayer line at Immanuel Baptist Church and will check the website or check with A.J. God is in control and miracles happen all the time. We have a friend that had a double lung tansplant 3 years ago and never had a problem. God lifted her up, so we know HE is still in the miracle business.
12July 26th, 2006 at 4:47 pm
Hi Bobbie and Nelda, it’s good to hear from (distant) cousins! We really appreciate you putting Ava on the prayer list at Immanuel. And your testimony about your friend gives us hope! Take care,
Randy and Anja
13July 26th, 2006 at 4:49 pm
Hi Helga! Thanks for the kind words and for dropping by the other day to help out w/Ava. You’ve been there from the start (feeding a hungry father to be!) and we REALLY appreciate it. We’ll see you later!
14July 31st, 2006 at 8:53 am
Hi Randy and Anja,
Last night, Extreme Makeover Home Edition featured a Boston family with a child with SMA. The show did a great job promoting finding a cure for SMA. I hope you caught it! Here’s more information: http://abc.go.com/primetime/xtremehome/bios/310.html
15July 31st, 2006 at 10:53 am
Lori, that’s awesome news. Thanks for the tip. We unfortunately didn’t get a chance to see it, but just knowing that ABC created awareness of the disease is heartening. Thanks for the extra info!
16August 2nd, 2006 at 10:14 am
Dear Ava,
Just stopping by to wish you a Happy Belated Birthday! You sure are a beautiful girl.
Love,
Andrea, Steven and James Smith
17August 3rd, 2006 at 9:26 am
Dear Ava,
Just wanted to wish you a Happy Belated Birthday, beautiful! Never have I met such a sweet, happy baby. I hope you have a lifetime of happy birthdays. You are blessed to have such wonderful, devoted parents, grandparents and family.
Love,
Denise
18August 5th, 2006 at 1:24 am
Anja and Randy!!
I just read your blog and I am sooo impressed with you and your hard work to get little Ava well.Give Ava a big kiss for her 1 st Birthday .
19August 9th, 2006 at 1:37 am
Hi Ava:
You are so beautiful! I saw your picture of FSMA and found your website through there. My name is MJ and I am 18 years old and have SMA like you do. I live in New York but am moving to Ohio in a few weeks to go to college. I would love to send you a blanket from my organization, B4SMA. I send blankets to kids with SMA. I look forward to hearing from you. Love and blanket hugs, MJ
20August 12th, 2006 at 8:30 pm
Randy & Anja,
I talked to Ava today and she said to me, “What’s up with that?” Truly amazing. She is beautiful, smart, funny and full of energy. Thanks for letting me spend some time with her. Oh yeah, she also told me she’s a big EAGLES fan! Imagine that. As always, if you need anything, just tell me. You don’t need to ask.
21August 15th, 2006 at 6:30 pm
Randy and Anja,
I had a wonderful evening yesterday with Ava and Grandmom (Anja too). Anna, Anja and I stopped by and got to see Ava put on a wild display of singing and noise making. I drank some good coffee, Baton Rouge style. Ava answers the telephone as quickly as her mother, and sings along with the video. I think her eyes are getting bigger everyday! Even when she fusses, she is a cutie. When she gets a little bigger, my Anna can teach her to make cheese omelets. Ava continues to amaze me with her energy and increased vocabulary. Thanks again for letting us be a part of her growing up.
22August 16th, 2006 at 12:05 pm
Randy and Anja,
Ava is the biggest cutie! At one year old she’s smarter than all of my friends put together. I asked her to and she says that the Redskins are “BADDDDD” she also says E..A..G..L..E..S EAGLES!! She could be a cheerleader. She knows how to dance and sing.
23August 31st, 2006 at 3:24 pm
Randy, Anja, & Ava,
I am a long-time client of the McLin Agency. Your family has been more like good friends than business associates, and when Mr. McLin told me today of your struggles, I felt your pain. I will be praying for you all. I know the Lord hears and answers prayers, and that He is aware of your needs. Never forget that. He knows you by name and will not forsake you. I have great faith that He will not give you more than you are able to endure, although sometimes it seems that way.
I must agree with Grandpa’s description of Ava – she is absolutely beautiful!!!
Rosie Brian
24September 13th, 2006 at 3:05 pm
Ava Louise,
Grandpa & Nonna gave me a picture of you to put in my purse.
I really do love you and wish we could play together. My mommy & daddy and my big sisters Kelsey & Alicen love you too and have a picture of you to show everyone how beautiful you are. We pray for you all the time.
Jesus loves you & me!
Sarah Grace
25September 22nd, 2006 at 3:04 pm
Cast you cares upon the Lord.Believe in the word of God.
My prayers are with you and and your family.
Sometimes its hard and sometimes you might not know what to say to Jesus but,when you dont know what else to say just say the name of Jesus.
He hears your cries.
May you be with God in your time. God is always with you.
26September 23rd, 2006 at 5:06 pm
Hi Randy, Anja, and Ava,
Randy, I hope you are feeling better. Ava, you stander is phantastic.
Anja, hope you are doing well.
Gerdi
27October 2nd, 2006 at 10:52 pm
Dear Randy, Anja, and Ava,
My name is Aileen, and I am a friend of AJ and Patricia. I heard about baby Ava, and seen pictures of her. She’s one cute baby! I just wanted you guys to know that I am praying and thinking about Ava, and I hope that she gets well soon. I’m not very good with words, but I just wanted to let you guys know that I care, and I’m sending my prayers on over there! Keep your chins up! I know in my heart that things will turn out okay, because Ava is such a strong, beautiful baby. Have a great week, don’t forget to smile, and give Ava kisses for me!!
Sincerely,
Aileen
28October 11th, 2006 at 4:16 pm
The Red Stick Kiwanis Club of Baton Rouge,Louisiana ,board of directors have voted to make a donation of $1000 to the Ava McLin Fund.Secretary Phil Divincenti of the club has been extremely active in getting this donation request to the Board.Jacques Villaume a board director brought the issued up before the 10/11/2006 meeting and he made the motion to contribute this money. Red Stick Kiwanis club members work hard on different projects to raise monies for worthy causes such as Ava’s. All these members do this on a volunteer basis. Congratulations to all these men and woment in this club.A real salute for them.
29October 20th, 2006 at 3:38 pm
How’s little Ava doing lately?
Love
Aileen
30November 19th, 2006 at 1:36 am
I was just thinking about Ava. Hope you all are well and have great Thanksgiving!! We all have a lot to be thankful for!! If you need anything just let me know!!
Hugs,
Jeanna
31November 22nd, 2006 at 9:15 am
Sorry for the late reply, Aileen and Jeanna. We’ve been REAL busy lately lining up treatments and equipment for Ava and are just getting a breather, so to speak.
Ava is doing well right now. She’s eating and sleeping fine and seems to be tolerating her Hydroxyurea treatment fairly well. Her bi-weekly blood tests indicate the Hydroxyurea is not affecting her white blood cell counts too much to be worried about, and Anja and I can see some strengthening in her arms and legs.
We’ll try to get more information up sometime soon. Overall, she’s doing well right now and we’re praying her treatments will keep her strong and healthy.
Thanks for writing in!
32December 19th, 2006 at 5:54 am
Hallo Ava,
ich schreibe bewusst auf deutsch – das sollst du ja schliesslich auch mal lernen…:-) Tolle homepage! ich finde dich sooooo suess, dass ich dich auffressen koennte! schade, dass du nicht in deutschland wohnst, dann koennte ich dich mal persoenlich kennenlernen!
lg auch an deine mami und an deinen papi!
hugs
tina
33December 26th, 2006 at 3:30 pm
Hi Randy and Anja, We just wanted to let you know we were thingking of you and Ava. We are from Louisiana and are friends of your mom and dad (Randy). I (Krystal) think I met ya’ll once at their new house in Denahm Springs. I was there neighbor when they lived in the KOA campground. I still talk to your parents from time to time and try to go and see them when I can. I am the one who is in Vet School at LSU. Well we are praying for Ava and all of your family.
Sincerely
Krystal Pickett
and
Lance Dupre
34February 5th, 2007 at 12:25 am
Hey there — just found your site off the chat — nice!
Turns out you don’t live that far from us so maybe we’ll see you sometime. 
Ava us a cutie!!
35February 16th, 2007 at 5:27 pm
Hi Nate and Diana,
Are you from the SMA family? Where do you live?
Anya
36March 7th, 2007 at 3:47 pm
Hi McLin Clan,
The Panthera model seems very lightweight and mobile. God bless you guys and hope to see you all soon.
Katja forwarded me the website featuring Ava and her new wheelchair! She’s really zipping around quite well! I hope she doesn’t speed like mommy!
Love,
Rick
37March 9th, 2007 at 8:53 am
Hi there,
I work with Fight SMA and stumbled across your blog. Very well done!!! You should take a look at the video I posted the other day on the Fight SMA blog (link to blog: http://www.fightsma.org/blog/). It was produced for an event in Atlanta recently. It introduces a bunch of SMA kids in our Atlanta chapter. They’re great kids and it’s an outstanding video.
By the way (didn’t know where else to ask this) would you mind switching our link from fightsma.com to fightsma.org? We’re using .org now.
Thanks in advance!
Steve
38March 15th, 2007 at 12:04 am
Just stopped by to see what has been going on. Cool looking chair and only 8lbs. Anyhow, much love as always.
- Kerry
39March 16th, 2007 at 1:22 pm
Hi Randy and Anja and Ava. Spoke with Pat this week and she told me about your need for laminate floors to make it easier for little Ava to get around. You know if we can be of any help in this matter please call, even if it might be just for installation advice. Ava is darling and I know she is a brave little girl and I also know that God takes special care of special children like Ave and my Anna. (Phone edited to protect privacy – Randy).
40March 24th, 2007 at 9:43 am
I enjoyed taking Ava and you to the Shriners Hospital yesterday. Ava seemed to enjoy the ride even though we were stuck in traffic for hours. Best wishes to you all.
41March 25th, 2007 at 7:45 pm
Mrs. Moneda, thanks so much to you and Mr. John for the offer. Mom’s going to call you tomorrow with some information I gave her to day.
And many thanks for the prayers. God’s taken care of Ava so far.
42March 26th, 2007 at 5:17 pm
Hi Dick,
Thank you very much for taking us to Philadelphia to Shriners Hospital last Friday. We were lucky to have had the pleasure of riding with such two nice gentlemen like you and Mike.
Your company took the edge of the usually dread I feel when taking my bright and happy baby to the hospital to see what functions she has lost or will loose next.
We are looking forward to the Easter Bunny at Shriners. Thanks for the invite.
Regards,
Anya and Ava
43March 31st, 2007 at 7:53 pm
Randy, Anya and Ava:
First of all, my name is Ashley and I’m Darrell and Pam David’s daughter. We’re dear friends with Mr. A.J. and Mrs. Pat. I’m sure if you seen a picture of us, you’d remember us. I’m probably all grown up since the last time you’ve seen me. I went over to your parents house last week and they told me to check out the website. She is an angel. She is SOOOOOOOO beautiful. I pray my child is as beautiful as she is. You two are very strong parents and I know you’ll do a wonderful job raising Ava. I love the wheelchair. I bet she can’t wait to move all over the house. Take care and ya’ll are in my prayers.
Ashley
44April 2nd, 2007 at 11:43 am
Hey Ava!
I just wanted to wish you a HOPPY, HOPPY EASTER! I’m
sending you an Easter goodie box and I hope you have as much fun with it as I did picking it up for you! My big sisters Kelsey & Alicen send hugs and kisses to you along with my Mommy & Daddy. We hope to see you soon! I hope the Easter bunny brings you lots of yummy treats! I Love you,
Sarah Grace
45April 17th, 2007 at 9:21 pm
Hi there!
It’s me … Steve from Fight SMA again. I had something I wanted to share with you, but I didn’t know a better way to contact you. I thought you might be mildly interested to hear that Fight SMA has published its very first PODCAST! This one is an interview with Natasha Wood, who has SMA Type 2 and is performing in a one woman autobiographical show in California.
Here’s a link: http://www.fightsma.org/blog/podcasts/podcast-natasha-wood-rolling-with-laughter-spinal-muscular-atrophy.html
46May 1st, 2007 at 10:00 am
Randy,
Your dad and I graduated from Istrouma together. He makes me buy insurance from him although he never gives me a cup of coffee when I go to his office to pay his exorbitant charges. Pat, however, is a gracious Southern lady and makes up for A J’s troglodyte manners.
I pray for Ava everyday and will continue to do so.
Blessings,
Bobby
47June 3rd, 2007 at 3:08 pm
Hey there! I am on SMA Support chat, and just got the chance to look at little Ava’s website. It is totally cute! Do you keep it up, or your husband, or what? Anyways, we live in Richmond VA, like 2 hours from you — we would love to meet you. I have a little girl, Taylor, who is 21 months and type II SMA. If you are interested, that would be really cool. I’m also interested in figuring out how you get people to “Shop for Ava”. Please email me back and let me know if you want to get together… how you “shop for Ava” info would be greatly appreciated as well! Take care!
48June 3rd, 2007 at 8:27 pm
Hi Visha, this is Randy writing. Nice to hear from you! You can send Anja email at anja***@mclin.org (remove the three stars ***. I put them in to keep the email address from being harvested). We’ve got some friends staying with us this week, but she should be able to get back to you in a few days. Take care! We can also chat later about the “Shop for Ava” also.
49November 26th, 2007 at 11:00 am
Ava, Anja and Randy,
God bless Ava. She is such a cutie!!! When I held her in my arms the first time ever, at the Austrian Restaurant in Reston, I fell immediately in love with her!!! Big wise eyes, bigger smile.
This is my first enry into this guestbook but not my first visit.
I came back from 7 month in Wedel/Hamburg, Germany. My mother and brother where not well.. are now oaky….thanks to prayers , they help and heal, I know!!!and the doctors.
I am here for a while in VA, if you need help call me, e-mail me
I pray for you all
INGE
50November 26th, 2007 at 12:05 pm
Hello, you do not know me but I wanted to let you know that Ava is on my prayer list. There are more than 40 different muscular dystrophy diseases that people suffer from. I have one of the rare ones, and fortunately I do not need a wheel chair. I can not imagine what it must be like for little Ava, she must be a very strong little girl. God is with you all through this difficult journey. I pray that she will be healed.
51November 26th, 2007 at 2:17 pm
Tonya, thank you so much for the kind words and prayers. What Ava lacks in muscle strength, she makes up for in spirit. I’m sorry to hear about your own fight with MD, it’s a very tough battle for everyone involved. God bless you for caring enough to write and pray!
Inge, we’re very happy to hear from you again! Anja said she will (or has?) called you already. Take care and God bless!
52December 2nd, 2007 at 2:16 am
Ava, Nonna and Papa miss you so much, and I just wanted to let you know Papa is getting stronger each day. We might not be there for Christmas, Dollbaby, but we hope to be there soon after Santa visits you. We cannot wait to hold and hug you
and get all of your sugar. We pray for you always and know you have the best Mommie and Daddy to take care of you and who love you so much. Nonna and Papa
love you with all their hearts.
53February 10th, 2008 at 8:55 pm
you guys are so special!! thank you for keeping us posted on all the wonderful things your family is up to!! Question: why is your new dog named Miss Lily ??? I love this site and will keep visiting it!! Anya, did you make the flan yet???? kisses and hugs for Ava
lily (not the dog!)
54February 11th, 2008 at 12:54 am
I had so much fun being with the three of you at Our Lady of Lourdes Grotto yesterday. What a memory to be there since tomorrow is the 150th anniversary of Our Lady appearing to St. Bernadette and declaring “I am the Immaculate Conception”. We continue to ask for Our Blessed Mother’s intercession with our prayer requests.
What a sweet, beautiful little girl she is. Passersby thought it was cute that, since it was cold, Ava wore my adult gloves.
Lunch at the Cozy Restaurant was tasty. I continue to lift you all in prayer. I know the Lord has His special plan for her. You’re so special to all of us!!
With love to you all,
Lisa
55March 14th, 2008 at 10:43 am
Hallo ihr lieben!
Gerade habe ich mich mal wieder auf Avas Seite umgesehen und bin vorallem bei den Videos hängen geblieben.
Es ist kaum zu glauben, aber Denise und Ava sind sich sehr ähnlich, bzw. sah ich im kleinen Schieberolli meine Denise sitzen. Die Bewegungen, die piepsige Stimme, die Fröhlichkeit, ja selbst Haarpracht …ich war super erstaunt gerade. Kaum zu fassen, wie manche Kinder sich doch auf eine gewisse Art und Weise ähneln.
Ich wünsch euch alles liebe und man liest sich hoffentlich im SMA-Forum wieder.
Grüße aus dem nasskalten Deutschland.
Bianca mit Denise und Familie
56March 23rd, 2008 at 4:29 pm
Hello,
I wish you all Happy Easter!!!
I hope you ar doing well.
Greetings from Berlin
Friederike
57April 24th, 2008 at 7:31 pm
Randy:
Your Mom gave me the web site on Ava months ago and I misplaced it. I just found it and have been reading for an hour on your beautiful Ava. She is a blessing from God and your journey through this trial will bless you and Anya a million times over. This makes me treasure the health of my one year old grandbaby, Hanna Grace. Ashley and her live in Florida. My thoughts and prayers are with you all, and like your Mom, Dad and brother, you will always hold a special place in my heart.
Carl (Joseph)
58May 5th, 2008 at 2:45 pm
Hey McLin family — we live up the road from you in MD and I’ve been reading your blog for a while and browsing any pictures you guys put up. Ava’s a pretty little girl and I’ve enjoyed catching up on her story as you post! Anyway, we are an SMA family as well and share in your joys.
Peace <
Nate, Diana, Annabelle, (Linnea), and Emily
59May 20th, 2008 at 7:25 am
hi anja
wie ich gehsehen hane hat deine suße tochter endlich denn rollstuhl bekommen wo du schn so lange gewartest hast und fahren kann sie auch schon ich wünsche dir un deiner fam alles gute ein küsschen an eva
lieben gruß andi und pati
60June 5th, 2008 at 2:11 pm
hello.
very nice website you have and and a very sweet daughter.
I live in Sweden with a wife and two children.
Both my children have SMA. They are three and four years old, a boy and a girl.
Glad to see you in the U.S. use wheelchairs from Swedish companies. both Panthera and Permobil builds very good things. I just wanted to say hi. Hope you understand my poor English:)
hook me up on myspace.
take care / tobi
61June 24th, 2008 at 7:31 pm
Greetings;
I just watched a youtube video of Ava in a R82/Snugseat Stander with the Vibration attachment. I have read that more than 10 minutes a day can cause damage to bones and muscle and wonder why you choose to do it for 1-2 hrs/day. Or do you disconnectr after 10 minutes? Also, I have been told thatthe vibration will ruin the stander over time. Have you found that to be true? I also wonder why here right heel is up in the air. I have seen protocols where the feet are on the floor or on the platform so you vibrate the long bones first, have you seen a researcgh study do it the way you are doing it? I have wanted to so it your way buy was told not to, so please help me understand! I use the platfrom on the floor and stand the kids in a Rifton gait trainer.
62June 25th, 2008 at 1:04 pm
Ava, you are absolutely gorgeous, and I can’t believe how much you have grown. You have the same powerchair as Autumn (except hers is blue), and hope you love getting around as much as she does. Anya and Randy, I bet you cried so much when that powerchair finally came. We got ours EXACTLY one year after her diagnosis, and I cried all day–I was so happy that technology was able to give a little something back that SMA took away.
Anyway, we all wish you much love and continued good health.
Hugs to all,
Wendy, Autumn, and the rest of the Persingers
63July 29th, 2008 at 3:04 pm
Happy Birthday, Ava!!!
We’re so excited to see you got your van! If you’re making a trip to MD, stop by!
Hugs,
Anke and the gang
64December 5th, 2008 at 7:42 am
Hallo Anja, hallo Ava, hallo Randy,
ganz liebe Grüße aus München.
Google sei Dank hab ich Euch gefunden, da unsere Kontaktdaten wohl nicht mehr aktuell sind.
Wir freuen uns, von Euch zu hören und wünschen Euch und vor allem Ava alles alles Gute.
Andreas (und natürlich auch Tania, Maxi und Flori)
65February 12th, 2009 at 10:15 pm
Our daughter Gabriella was diagnosed with SMA at 11 months. She is now 18 and finishing up her senior year in High School.
We have had many good experiences and have learned about medical issues and treatments as well as the most practical types of equipment.
Early in her young life we had many issues with RSV and pneumonia but as she grew older and due to us using the best medical equipment at home, she has not been hospitalized in 7 years. As she has grown she has been more resistant colds, flu’s, RSV and pneumonia.
We would like to be of help in anyway we can. By the way, I did not see any mention of MDA. If there has been something that has been one of the best activities for Gabriella, it was attending MDA Camp. She attended every year starting at 6 years old. Please feel free to email or contact me or my wife or even speak with Gabriella. I have logged in using my email address but just incase it is trecognitiong@aol.com. I will include a video link of Gabriella that was shown on the local news promoting MDA Camp. http://www.ksdk.com/news/difference/story.aspx?storyid=153307&catid=88 also her is an article link: http://www.ksdk.com/news/local/story.aspx?storyid=128276
Matthew and Kelley Garbero
66February 28th, 2009 at 10:19 am
Hello,
I hope that all of you are getting better soon,
Gerdi
67March 1st, 2009 at 10:03 am
That’s wonderful news. It’s always better to recouperate in familiar surroundings. Hope, Anja recovers from her cold soon.
68April 19th, 2009 at 1:59 pm
Es grüßt euch ganz lieb Josefina und die Mama Claudia aus Deutschland
69May 17th, 2009 at 12:28 am
HALLO AUS MÜNCHEN. ES WAR EINE FREUDE
EUCH BEI SABINE UND CHRIS ALLE ZU ERLEBEN.
***WAR NE DUFTE GARTENPARTY….2009.
LIEBE GRUESSE
KLAUS
70June 13th, 2009 at 12:21 pm
Hello dear Ava,
I’m Anna, we met in Medjugorje at Easter!
I wanted to know if your parents have contacted the Adeli centre, this is the website:
http://www.adeli-method.com/it/?gclid=CIa9lP_Sh5sCFUgTzAod0QySqA
I send you a lot of kisses and I hope you remember me.
I wish you all the best
Anna
71June 16th, 2009 at 2:18 pm
Dear Ava,
you are in my thoughts and prayers. i believe that God will bring you the miracles you and your lovely family seek!
72July 1st, 2009 at 10:25 am
Hello Anja, hello Ava, hello Randy,
We come from Greece and our names are..Fontas (dad), Maria (mum) and Anna our little 3.5 years old daughter.
We sent you our love and support!!!
Anna also diagnosed with SMA II , when she was 11 months old.
Your videos, your information, and everything you have in your website are amazing!!!!
You help us so much with the equipment!!!
Ava looks so nice and beautiful!!!
Last videos with her new stander are AMAZING!!!
If you dont mind we would like some information about the stander..please e-mail us about it if you want!
Many thanks
Give our regards to Ava, she hold a special place in our hearts!!!!!!!!
73September 3rd, 2009 at 4:39 pm
Ava,
Thank you for comming to fairfax county fire station 40 for the MDA kickoff event. It was so nice to meet you and show you the fire truck and the fire station.
When Im out collecting for MDA next week Ill think of you and your family. Maybe nextime you come by Ill have a better magic trick.
your new friend
Fireman Mitch
74October 15th, 2009 at 12:11 pm
Randy,
Ava looks wonderful. It’s great seeing her pictures after a year. It’ll be wonderful if we could catch up in the evening at Reston.
Take care and God bless!
75October 16th, 2009 at 7:33 am
Hi Rajesh! Nice to hear from you and thanks for dropping by Ava’s site. I’m going to be in training for a month, but should be available again mid-November. Maybe we can get the families together then. Take care, Randy
76July 28th, 2010 at 12:49 pm
Dear Ava and parentes,
I hope you are doing fine. You visited me some time ago with in Egelsbach near frankfurt because of the Swivel Walker. Please be so kind to provide me with a personal e-mail and phone no. so that I can contact you about the very nice video in You tube.
I look forward to talk to you soon Kind regards
Benedikt Preisler