Ainsley's Angels of America is super excited to be spreading awareness through activism and to help ensure Alex can get a Team Hoyt BLADE!
Take a chance to get to know Alex below AND you learn even more by clicking here.
Alex has severe Hemophilia A, which means his blood can't clot properly and requires an intravenous infusions of factor replacement each time he has a bleeding episode. Alex developed an inhibitor (an anti-body to the clotting factor replacement therapy) after having surgery around a year old. He now requires specialized IV treatments through a port in his chest, which was surgically implanted at four years of age. Due to growth, after 6 years, he had to have a new port placed.
Alex also lives with global hypotonia, which affects his entire body. Starting from just a few months old, he has needed physical therapy, occupational therapy, speech therapy, and Anat Baniel Method training, multiple times a week. At 14 years of age, he is still unable to do any activities of daily living (eat, drink, brush is teeth, sit, stand, etc.) without assistance and we are still waiting for him to talk to us. We have made many adaptations for him to try and help his mind and body. He continues to improve, but the milestones are few and far between. When they happen, there are always tears of joy!
Alex loves participating in running and biking events and is in need of a more supportive jogger / trailer, which Team Hoyt has figured out how to make after years of doing endurance events together and testing out many a "prototype".
The seat of their chair has a shock absorbing design, which is perfect for a severe Hemophiliac, like Alex. The seat design also supports the spine and legs in a way that is comfortable for global hypotonic individuals, like Alex, who tires easily and has balance issues. The chair is very customizable, so it will be perfect for Alex's needs.
The chair will also allow him to be more social with family and friends at other events that can be limiting, such as: beach events, picnics, outings, and field trips.
Kim (mom, also having hemophilia) started biking and running in 2011 to improve her own health in hopes of having fewer bleeding episodes. She hopes to show people with hemophilia that taking care of yourself is important for keeping bleeding episodes at a minimum. She has pushed Alex through many 5Ks, and pulled him by bike quite often, and would like to continue with the Blade chair, as it would give Alex the appropriate support he needs.
We want to continue to inspire people with hemophilia and other special needs to follow their goals and dreams. Don't let your "disability" stop you. Use it to make you stronger!
Please consider donating to keep Alex rolling!
YES, YOU CAN...donate right now to ensure this is a reality!
Click the pink button in the upper right of this page or e-mail: info@AinsleysAngels.org for a link to make a donation using PayPal or for a mailing address should you prefer to donate by check. We will ensure all donations appear on this page as off-line donations.
Should any company offer matching donations to their employees, Ainsley's Angels can be added to their database, if not their already. Just have them visit the bottom right of our webpage for TAX ID and other 501c3 information.
Another way to help, is to spread the word of our message and efforts:
1. Visit www.AinsleysAngels.org to purchase the children’s book, Born an Angel, written by Ainsley’s sister and donate it to a local elementary school library!
2. Follow us on Snapchat, Instagram and Twitter: @ainsleys_angels
3. Lastly, we invite you to enjoy this USA TODAY Video Story