Last March, Abram had the opportunity of a lifetime to be gifted an adaptive trike through the Variety Club of Iowa. His wonderful Occupational Therapist nominated for him to receive a bike and it is the one physical activity that he can do without fear. Abram has hypotonia, an abnormal gait and abnormalities in his brain that affect his vision in a manner in which he has a hard time with different terrains, stairs and other situations other than walking on flat concrete/flooring.
Riding a bike gives him a freedom he doesn't know in other aspects of his life. His face lights up. His little feet go as fast as possible and he flies! On an adaptive trike, he is able to just be a little boy with the wind in his face and the wonderful feeling of just speeding down a hill pedaling as fast as he possibly can. He doesn't have to worry about what his feet are doing because they are strapped in. He doesn't have to try hard to keep his hands on two separate handles as he has an adapted steering wheel on his trike as well. When he's on his bike - it is the only time in his life where is truly just free to be a little boy. It is the best thing to watch and something he worked SO HARD on to be able to do.
After participating in last year's Variety Telethon, my husband took it upon himself to start an employee giving program at his place of employment and last fall we were able to gift another little boy with a similar chromosome disorder his very own adaptive trike as well. It was the best feeling to see my husband do something so wonderful for another family and to get his employer involved in such a wonderful local charity that not only gifts adaptive trikes to special needs kids but they also provide funding for vans to transport children to doctors appointments and therapies, they work with Iowa communities to prove all-inclusive playgrounds, they help provide equipment and building expansions to much-needed therapy centers in Iowa and they help families who are struggling with the expenses of having medically complex children. Being able to participate in a tiny part of what they do makes me incredibly proud and happy.
In the fall, we were asked to participate in their new ad campaign. In all honesty, Abram had a hard time with the photoshoot and became overwhelmed, very agitated and cried so we were worried that they wouldn't be able to use his photos at all.
Imagine my shock when a friend wrote to me one day and informed me that they saw my son on a billboard in the city. I was so excited my friend Deb and I had to drive down just to see it in person. Seeing my son on a trike on a billboard made me beam with so much pride! He's worked so hard to be able to even ride a trike, especially when an orthopedic surgeon told us when he was an infant that he may never walk due to the nerve damage he received during his traumatic birth. I was beaming with pride and I was SO excited.
It turns out, he is on multiple billboards across the city and is in several different ads as well. We've driven around just to go and see them. There's just something so amazing about seeing him glowing in the night on an electronic billboard - it is literally a giant glowing example that NO doctor can set limits on what your child can or can not do. The only person that will dictate where Abe will go in life and what he will do is Abe. We are just here for the ride.
Abe - You are the light of my life and I am so proud of you. You work so hard to achieve your goals and no matter how difficult the road is - you do it with a smile on your face.
If you are interested in learning more about the Variety Club, please visit their website: varietyiowa.com/learnmore!
In honor of yesterday's "World Rare Disease Day" I wanted to share a little bit about the connections we've been able to make since Abram was first diagnosed with UBE2A Deficiency Syndrome.
It's been a little over 2 years since we got the diagnosis of UBE2A. Abram's case was the first that the University of Iowa, the University of Chicago and Mayo Clinic had ever seen! I was relieved to finally have an answer and immediately tried finding other families through Abe's blog and lots of digging!
Now, we know TEN other families from around the globe. I cannot tell you how amazing it is to have a group of moms and dads who can help answer questions and offer guidance. When doctors and geneticists admit that they are "learning from Abram" it is very important and special that we have these other families to rely on for medical information as they have or are currently already living it.
These phenomenal moms and dads have helped us understand certain parts of Abram's condition and have alerted us to things that our doctors didn't even know to look out for! When it comes to rare genetic disorders, how lucky are we to have the power of the internet to connect us all?
A extra special "thank you" to Tracey Stedman Harris who lost her sweet boy Nathan and continues to help guide families like ours! You can read Nathan's story on the UBE2A Brothers.
Here are some of their sweet faces and I'm sure you'll agree that all of our boys share that amazing award winning grin! <3<3
Hi! I'm Erin. I am a single mom, tireless advocate for UBE2a Deficiency Syndrome and a fierce proponent for medical cannabis.