Thanks to everyone who helped raise over half the funds we needed to buy Ava’s powered, wheelchair van! Ava can now take her Permobil powerchair to the mall, school, vacations, etc. God bless everyone who contributed!
As any SMA family can tell you, there’s always a need for new equipment, so if you’d like to help Ava, use the ChipIn! donation button to the right. Take care and God bless.
It seemed like a good idea when Ava asked Daddy to go outside and play in the rain puddles. Watch the series of three videos below as a good idea leads to the law of unintended consequences!
And big news for Ava! She’s going to preschool starting next Tuesday! We’ll post some pictures and more video soon after. She went to visit the preschool twice this summer and she keeps saying she wants to go back, so, she’ll get her wish soon. Take care everyone!
After buying Ava’s van in Florida, we drove 900 miles to Baton Rouge, LA, home of Nonna and Papa McLin and a big loving family of aunts, uncles and cousins.
Ava’s 3rd birthday!
Ava’s 3rd birthday was another milestone for us. When Ava first received her diagnosis at 10 months old, the neurologist told us that 50% of SMA children don’t make it to the age of 2.
With that diagnosis, our lives changed forever. We were unaware at the time that there is an experimental medicine Ava could take. Ava started with Valproic Acid at age 2 which is not a cure but slows down the muscle wasting in her body. We are hoping in time a better medicine will be developed or even a cure. Since so many people have been praying for Ava our spiritual life has grown as well and we have faith that Ava will stay strong for a long time.
When Ava was 2 we celebrated and prayed thanks! And now at 3, we celebrated and prayed thanks many more times! Over the last two weeks, Ava’s enjoyed two different birthday parties in Baton Rouge, one thrown by family and one thrown by total strangers whose hearts went out to Ava.
Birthday Dinner at Mr. Gatti’s
Anja, Ava and Randy at Mr. Gatti’s
Nonna and Papa McLin were overjoyed when we arrived late at night from the trip from Fort Myers to Baton Rouge. The northern-most winds and rains of Tropical Storm Eduard lashed out during much of the drive through Alabama and Mississippi.
On the next day Nonna, Papa, and Tammy and Charles held a mini-birthday party at Mr. Gatti’s Pizza Place for Ava, with pizza, presents, and a mini-cake as part of the fun (here’s some video). Ava had a blast eating her way into her chocolate cake and loved playing with a “lady-bug flashlight” that her cousin Sarah gave her. The flashlight was a special gift, since Sarah went into her own toybox and picked out that toy for Ava!
Randy’s godmother Dorothy (Nonna’s cousin), was also at the dance. Nonna and Dorothy actually hit the dance floor together at Brunet’s, for the first time in 50 years! Ava’s Uncle Kevin (Randy’s brother) also was there and it was amazing over the two weeks to watch Ava getting attached to her uncle Kevin, who she doesn’t get to see often.
Ava also hit the dance floor with a whole bunch of people, dancing at various times with Nonna and Papa, Mommy, Daddy, Sharon (a waitress at Brunet’s who introduced Ava to Mr. Brunet). A wonderful lady named Marsha Fauver, who fell in love with Ava and planned a birthday party at Brunet’s the following week giving Ava presents and a chance to dance all over again. Thank you Marsha and everyone who attended! It was a really wonderful time for Ava and the rest of the family. We’ll try to post the video from this dance later.
Sarah and Ava at the Birthday Party
Birthday Party At Tammy & Charles
Wow, what a blowout! Swimming, pinatas, fried fish, and family & friends from all over! Ava and her cousins had a ton of fun and hitting Aunt Tammy’s beautiful swimming pool on. Later came time for presents (thanks everyone for all the gifts given to Ava), cake and homemade ice-cream (Aunt Alice’s recipe!). Ava had a hard time focusing with all the activity going while opening presents, but her little cousin Sarah was right there to help her out! Later, Cousin Peter fried up a huge batch of yellow striped bass for dinner, and afterward, Ava and her cousins played late into the night.
It really was a fun time, especially given that so much family and friends came who we hadn’t seen in years. It was great to catch up with all of them. Aunt Tammy, the perfect party planner, just knows how to theme a party (decorations, cake, etc.) perfectly matched all with Winnie the Pooh theme which Ava loves.
Final thoughts
Seeing Ava have so much fun with all the friends and family, and even strangers turned friends like at Brunet’s Cajun Restaurant showed us how lucky and blessed we have been with Ava’s good health and the chance to see all her family. Once again, we realized how how far away we live from so many good people. Below are a series of pics from the visit. More pics of the visit are here. Again, thanks everyone who made this visit such a very special one for Ava. God bless you all!
Sarah, Jadah, and Heather at Avas Birthday Party
Kevin, Ava, Nonna, and Papa at Ava's Birthday Party
Anja and Ava at Mr. Gatti's
Ava's Birthday Visit to El Rancho's
Charles, Anja, Randy, and Tammy at Mr. Gattis
Alicen, Rebecca, Jada and Ava at Birthday Party
Ava Dancing With Nonna and Papa at Brunet's Cajun Restaurant
Ava has a wheelchair van! We found the van on the Internet in Ft. Myers, and it was exactly the mix of what we needed and what we could afford. Check out the pics!
New wheelchair vans range from $40K to $60K — too much for our budget, especially given future home conversions Ava will need (an in-house lift to get Ava between floors, a remodeled bathroom to allow her to bathe on her own, etc.).
Luckily, we test drove a Ford 2002 conversion van in Virginia that we liked. We priced similar models on the internet and came across the same model in much better condition at a much better price in Florida. The van in Fort Myers was $22,000 — very reasonably priced, very low mileage (19K miles), and in great shape. So, off to Fort Myers it was, to enjoy a short vacation and to buy the van.
The 2002 Ford Conversion Van has an automatic Ricon wheelchair lift we need for Ava’s chair and enough space for us to bring Ava’s equipment on vacation, like her stander, manual wheelchair, cough assist, etc.
The previous owner, a man with multiple sclerosis, kept the van at his vacation home in Fort Myers, Florida (he has a new van now to better fit his needs). His brother and sister-in-law are retired in Fort Myers and arranged the entire sale with us (many thanks to Ed and Mary K. for all your emails, calls, pictures and help to purchase the van!)
The van needed only three changes: wheelchair lockdowns installed to hold Ava’s wheelchair, a new seatbelt to hold Ava while in her chair, and a new driver’s seat base installed (the old one was on a long electric slider).
It took only two days of work to do it and didn’t cost too much- thanks to Dave from Ocean Conversions & Mobility in Ft. Myers.
For our first trip with the van, we stopped at a Costco, huge compared to the ones in Northern Virginia. One side note: we’ve noticed how overbuilt Florida is on residential and retail buildings! So many homes and shopping centers are empty. Many, many homes are for sale and ‘for lease’ signs adorn rows and rows of empty retail space. It’s going to take years for all these excess houses and shopping centers to fill up.
At Costco, Ava was able to drive her chair onto the wheelchair lift and be lowered to the parking lot! Ava was thrilled to wander the wide aisles of Costco by herself and looking at things she wanted to look at, just like a normal kid. It was fun following and watching her.
That’s the kind of difference we knew the van would make! Many thanks to everyone who contributed to the van. We were able to raise enough to pay for half the van and to finance the rest. God bless everyone who helped. It’s already making life more accessible to Ava!
So after a week in Ft. Myers and enjoying Gulf-side beaches and the palm trees, we are off to Baton Rouge to celebrate Ava’s 3rd birthday with her relatives! Nonna and Papa are all excited since we’ll be in Baton Rouge for two weeks, and then will start the two-day road trip back to Northern Virginia.
It’s been some time since our last update on Ava. She’s doing well with her current medicine levels and all the prayers — God bless everyone who is continuing to pray for her. Most recently, Ava surprised us by doing something she’s never been able to do before — lift her arm straight above her head and point to the sky!
To the left is a picture of her doing just this while Ava’s Nonna and Pappa were visiting this spring.
Ava’s Health
Pointing to the sky might seem such a small thing, but for Ava it’s huge. Before now, she only could lift her hands to eye level, not even being able to touch her own hair much. Now, she can put her hands to her hair and brush it aside from her eyes, or scratch her own head — hah! Or literally point to the moon or an airplane, two things she’s always on the lookout for.
One of the biggest fears of SMA is the loss of abilities, but Ava’s actually gained a few. Her leg movements have increased somewhat too. When she’s lying on her back, she can lift her right leg enough to grab it with her right hand and play a bit, swinging it left and right. Again, it doesn’t seem like much, but given SMA, it’s a small miracle in our eyes. She’s also able to sit better on her own, though we stay very close by her side or put pillows around her in case she starts to lose her balance. Below is a photo series of her sitting better.
She still routinely does her nebulizer and cough assist, stands in her stander, and is stretched every day, but overall she’s been very healthy. Praise Christ and the Blessed Virgin!
Fundraising
Fundraising has been going well for Ava’s van (see the update above this article). Most recently, the Neighbors of Aintree Association — NOAA (an association of neighbors on the street we live) held a weekend garage sale fundraiser for two local non-profit groups and for Ava.
Also a big thanks to J. Abbey/V. Kelley, Dolores Manning, the Ryan Family, the Martin Family, M. Bostian, the Scherzer Family, Kathy Steinman, the Abbott Family, M. Jones, I. Cooper, A. Bow, F. Black, C. Maier and G. Hipson for their generous, individual donations!
Trip To Utah
In a couple of weeks, Ava and Anya will be flying again to the University of Utah’s hospital research center to visit with Dr. Kathryn Swoboda, a researcher in the treatment of SMA (see the Utah profile of SMA). They’ll be staying in the research hospital itself, while Dr. Swoboda’s team determine how well Ava is doing on her current Valproic Acid dosage level, actually testing to see if there’s been an increase in muscle, and making recommendations to adjust her dosages up or down.
Ava and Anja will be there for three days before flying home with an updated course of treatment. Thanks go to the Bauer Family for helping out with frequent flyer miles for this trip!
Ava and Anya went to the 2008 Washington DC MDA Heart Songs Gala. A black tie affair that raised funds to support MDA research and summer camp. The Muscular Dystrophy Association sends hundreds of kids each year to 90 summer camps across the country. The camps are barrier free for the kids with activities such as horseback riding and swim ming to less physical activities like art, singing, and talent shows.
During dinner, Tony Danza and the Radio King Orchestra entertained the guests with a medley of songs and dance. During one number, Ava was on stage with Tony as he sang a song! Ava and Mom sat right in front sharing a table with lovely people. Next to us sat the ex-mayor Marion Barry and his family with another MDA child and his mother. Ava also met Michelle from MDA, a beautiful and sweet young lady who cuddled Ava and held her for a power nap. Ava also met all the other kids with various muscular diseases who were invited. Ava, a night owl like her mommy, lasted to the end dancing with all the MDA staff and the older kids. Ava got to give the ticket to the vallet guy for our car and held on to the stub all night holding it tight in her fist on the way home.
St. Bernadette was born poor in Lourdes, France. For much of her childhood she was very sickly, so sickly that she she received last rites at least three times in her short lifetime.
Once while gathering firewood, a beautiful lady dressed in blue and white appeared to the child Bernadette, who quickly recognized her as the Virgin Mary and dropped to her knees to say a rosary. As word of her vision spread in the little French town, there were many doubters.
One day, however, the Lady told Bernadette to dig in the mud in a grotto on a mountainside and from there gushed a stream of water in front of disbelieving townsfolk. As the stream grew, people came and miracles began to happen as people were healed in the waters.
The faithful have continued to come for over 150 years seeking healing from Christ in the waters of Lourdes. Bernadette eventually joined a convent becoming a nun, before dying at the young age of 35 and eventually becoming a saint.
This year is the 150th anniversary of the Virgin Mary’s appearance to St. Bernadette. Pope Benedict XVI declared a plenary indulgence to anyone who visited a shrine dedicated to our Lady of Lourdes between Feb 2 and 11th of this year, to encourage Catholic faithful to make pilgrimages.
And that’s just what we did yesterday, bringing Ava before the Shrine and asking Christ and His Blessed Mother for Ava’s healing. It started out a dreary cold morning, but near the end of our visit, when we finished saying a rosary together with a friend (Lisa Turner) who made the pilgrimage with us, the sun broke from behind the clouds and the chilled air began to warm. It was a wonderful time.
At one point we also asked a Father Mike of Baltimore, to pray and bless Ava. Father Mike was leading a young tour group from Baltimore to the shrine and on his way down, Randy asked him to say a short prayer for Ava. We’re taught to keep knocking at our Lord’s door for miracles, and Father Mike was happy to knock again for us!
The National Shrine of Our Lady of Lourdes in Emmitsburg, MD is a beautiful place to visit. During the French Revolution, priests and nuns fled France to live in the United State and many settled in the Emmitsburg area. One priest, the Reverend John Dubois, founded Mount St. Mary’s University there and soon it attracted a nun who would eventually become St. Elizabeth Anne Seton. It’s not often you get to walk the same grounds that a saint did and yesterday was a wonderful time and place to do it.
Update on Ava’s Van Fundraising
We’re happy to announce that the Roger L. Von Amelunxen Foundation made a $3500 donation to Ava’s Van Fund! Roger L. Von Amelunxen was a Customs Patrol Officer who was slain in 1980. His family started the Foundation in 1982 in memory of their son. The Foundation is non-profit incorporated in the State of New York.
The Foundation’s purpose is to provide financial assistance to U.S. Immigration and Customs Enforcement (ICE) and U.S. Customs and Border Protection (CBP) employees and their immediate families nationwide. The Foundation’s administrative expenses are less than 5%. Since its inception, the Foundation has disbursed over 3.5 million dollars to what is now ICE and CBP employees and their families.
Many thanks to the foundation for their generous support for Ava!
We’d also like to thank the Roy Courville family of Louisiana for their recent donation to Ava’s fund. Two years ago the Courville family were the first to help our family begin the arduous and expensive tasks of buying equipment for Ava, and we’re very thankful to them and pray that the Lord may bless them greatly.
Both of these donations have pushed us over the 23% mark in this fundraiser and we again thank everyone who has helped. Ava is doing well and staying strong. We’ll work hard (and pray hard) to keep her strong until she has a cure.
Below are a few more videos of Ava from this summer when her grandparents visited and a more recent one, showing her playing. We hope the New Year is treating everyone well!
