Our little Maya is the light of our lives! She is a beautiful five year old girl with enormous challenges. When she was diagnosed with bilateral open-lipped schizencephaly, we had no idea what her life would be like. Over the past five years we have learned so much about this rare developmental disorder that has left large clefts on both sides of her brain. And while it is heartbreaking for us to know she is unable to sit, stand up or walk on her own--what we see is a happy little kindergartener whose smile will melt your heart.
Since Maya can't use her legs or spine to propel herself, she depends on her "wheelie" to be her legs and to help her get around at home and at school. But getting her from place to place is growing more and more difficult. When we take her out in the car, her wheelchair has to be completely disassembled and reassembled, and then broken down and put back together on the return trip. We store the chair in the trunk when she goes out, but in a few months, that imperfect system won't work at all.
Maya's hip is separating from her pelvis joint. That means surgery this summer to reattach each hip to the socket.She will be in a body cast for up to six weeks, and will need a special car seat and an even bigger wheelchair. We knew as she grew we would eventually need a van, but we thought we had much more time to prepare. Now we are faced with a looming deadline! The surgery takes getting Maya around to doctors' visits and school to a whole new level. So, with the clock ticking, we are looking for your help. We need to get her a wheelchair-accessible van by the summer, and they can cost up to $50,000!
Maya has made so many strides since birth, we are convinced this will open her up to a whole new world of mobility. We hope and pray you will be touched by this beautiful little girl who has been given so much to handle, and help make that a reality.