Team Jordyn

Jordyn is a five year old girl diagnosed with Alexander disease, a terminal leukodystrophy. For Jordyn this makes walking independently impossible and talking is very difficult with most of her communication coming from pointing and one word utterances. She has a g-tube through which she receives virtually all of her nutrition, since she is largely unable to feed herself. She becomes overwhelmed easily in crowded social situations, is heat and cold intolerant (she doesn’t sweat to cool herself down), and also has battles with epilepsy. 

As you can imagine all of those health issues require a great deal of equipment, medication, and therapies. Our family is planning a move soon to a new home that will be suited to our daughter and her unique care requirements, and we are hoping to purchase a van in the future that will allow us to load Jordyn into a vehicle without having to remove her from her wheelchair. We also travel often for care, Jordyn’s primary neurologist is a 400 mile round trip from our home, and we travel nearly 2000 miles at least once a year to her doctors in Philadelphia. 

All funds donated to this page will be used to help pay for Jordyn’s care. 

Thank you for visiting our page and helping us take care of our baby girl.