National Mobility Awareness Month Partners:
VMI

Ashley Barber

Bennington, VT

Entry Photo for Ashley Barber - Bennington, VT

Every parent wants to be their child’s superhero. We want to give our special needs children everything we possibly can. We manage situations that may seem impossible to people who may not live it every day. We wake up day after day and fight for the best possible care, we remember to administer medications and many other jobs. You encourage your child to do things doctors told you they would never do but you never gave up hope.

You are a therapist, nurse, doctor, friend and confidante. You are no regular parent. When Leah turned four months old her tiny body began to convulse and her development changed. When Leah turned one she was diagnosed with a rare genetic condition called SCN2A and Dravet Syndrome, which is a severe intractable epilepsy meaning it is hard to control and this also causes development delay, and many other coordinating health challenges. Leah is going on five years old and even though the seizures have taken a toll on her body creating low muscle tone, and some irreversible brain damage. It has never dulled her shine, Leah is a fighter she never gives up hope when times are tough, scary, and frustrating. Leah has a graceful nature where she takes everything in stride, she simply motivates us and for many others.

Our current situation is we desperately need a handicapped van. Right now we are using a sting ray that is a cross between a wheelchair and accessible stroller, we take this chair apart and reassemble it when we get places. Leah has grown and now needs a bigger wheelchair and this will no longer be an option to dissemble the wheelchair for us. We have a very limited amount of money due to costs of daily living and medical supplies that our insurance doesn’t cover. It is scary as a parent when you’re faced with a challenge like this especially when it is pivotal to having accessible transportation to doctors and hospitals for the love of your life. Winning one of these vans would elevate a lot of stress and give Leah the chance to experience living for as long as she is with us on this earth. To give Leah the best care is our goal in life to make sure she can continue to receive the best care possible.

Please Vote for Leah,
Thank you!!!