Avi and his bike
We were fortunate to get to help Avi and his family get him an adaptive bike. So instead of me writing I thought I would share the story from his mom Jessica....
Dear Armer Foundation,
I just wanted to take a quick minute to tell you a about our son and thank you. ￼Avi was placed in our home through foster care at the age of six weeks old￼. When he first joined our family we were told that he was considered failure to thrive. He was a preemie and and at age 8 weeks he weighed only 7 lbs. slowly he started to gain weight and get healthy. We knew he was a little behind and not hitting his milestones. At around six months old we took him to a neurologist and he was diagnosed with cerebral palsy very early so that he could receive therapy services. At age 8 months he started having seizures and was diagnosed with infantile spasms. That completely erased any developmental milestones that he had reached. At age one we were granted permission to adopt him! ￼￼￼￼￼￼￼￼We knew at that time it was going to be a long road to help him reach his full potential. We decided to go forward with a complete genome sequencing test to see if we could find any other issues that he might have that we could seek help for. It took about 6 months to get results; We found out that he had an extremely rare genetic mutation and they couldn’t match him with anyone else in the entire world that had it. His information went into a worldwide database to try and find anyone else that might have the same issue. Fast forward four years and we finally have a match. We have now connected with A Doctor Who has two other patients and has been doing a study on this particular gene. We have an amazing neurologist here at PCH, Micheal Kruer, Who has taken an interest in Avi and the study and is working to try to develop a treatment plan for him￼￼￼￼￼.
Since we had no diagnosis to go off of we sought out every type of therapy we could think of for Avi. We’ve traveled all over the country participating in therapy programs and studies to try and give Avi a little bit more mobility and control of his body. While he did gain lots of strength and learned a few new skills, he is still unable to do anything by himself. He’s nonverbal and non-mobile. Completely dependent on us to feed him, cloth him, move him... everything.
We have spent thousands and thousands of dollars buying special equipment, traveling to see specialists, buying a car that’s suitable for him to travel with his wheelchair in, ￼and seek nontraditional therapies. Through all of this what we have found a constant for Avi is that being outside and movement is what brings him Joy. He loves being around his cousins, peers￼￼, and in the community.
We did a lot of research and found a bike that we thought would give all that to him. We were so excited to buy it… then we saw the price tag, $6,000. Our bank account was drained from all the medical expenses. Then we found out about a an event called The Great Bike Giveaway. We entered Avi to try and win the bike. We did not win. But it gave us an option to fundraise through the website. We absolutely hate asking people for donations and it was really hard for us to do. I posted in a local Facebook group and the community support was overwhelming, particularly the support we received from Jennifer Armer. She reached out to me and told me about her foundation and offered to help us. The Armer Foundation organized a raffle giveaway at a local coffee shop. It was all set to be a success. Then COVID-19 hit. Suddenly people were being more conservative and afraid to donate, rightly so.￼￼ The Armer Foundation held the auction online and donated the money to us. When they saw that we were still short￼ they donated the rest so that we were able to get his bike! We are incredibly thankful for the generosity and support of the Armer Foundation we definitely would not have been able to do this without you￼! ￼ We deeply appreciate the work that you do for our son and many others. So from the bottom of our hearts thank you! ￼￼￼￼
The Srinivasan Family
Well COVID hit and fundraisers came to a halt but we still managed to get Avi his bike...