NOAH WHEELIE MATTERS Hi as of TODAY WE HAVE REACHED OUR GOAL AND POSSIBLY A COUPLE OF DOLLARS MORE AS FUNDS STILL COMING IN. we are Noah's family Shell, Ben, little sister Paisley and dog Hero& jAY& ETERNALLY GRATEFUL TO YOU ALL!!!!!!BEYOND BELIEF!!!!!. Noah had his first seizure at 11 weeks whilst being breastfed one morning and has had them every single day since for now over 18 years. Ambulance, hospital and I.C.U. for the first couple of months of his life as you can imagine was a heartbreaking introduction to parenthood. Noah fought for his life in hospital and we never left his side. We were eventually able to bring him home a fragile and damaged baby with no sign of a cure. It remains this way today. We returned to our home shocked, scared and financially struggling. Noah is a gentle and caring soul and we cannot fathom the strength he continually finds to fight this debilitating illness. On many occasions we have said our goodbyes to have him return to us. He is funny and very beautiful. We have learnt more about ourselves and life from Noah than any other person. Noah sadly has a degenerative illness called Lennox Gastaut Syndrome. The diagnosis is uncontrolled epilepsy that does not respond to medication. Noah has suffered anywhere from 5 to 150 seizures a day of all types his whole life and over the years we have endured many ongoing long and short term hospital stays. Noah is mostly dependent on a wheelchair and can only walk small distances fully assisted. He has serious associated health issues such as curvature of the spine, leg and feet deterioration including broken bones, mental developmental damage, dental complications, associated autism and perhaps the most difficult to deal with severe anxiety. We have exhausted all legal medications. Most recently Noah underwent surgery for a Vagus Nerve Stimulator device to help control his seizures. Unfortunately this operation seems unsuccessful. His rate of deterioration is increasing. Noah has increased dramatically in size adding 40kg in a 6 month period. This is mainly due to medications and lack of exercise. This increase in size means that his situation and mobility needs have changed. So far we have survived by lifting a small portable chair in and out of a medium sized family car but because we now require a motorised and larger chair we will need an upgrade to a wheelchair accessible van. We can no longer lift Noah or his wheelchair and he has many weight associated health issues.
We have looked at many styles of vans and modifications and won't be able to decide until we know how much money we can afford. We will be applying for government assistance however this only equates to approximately $4000. Our most likely choice of van is a Hyundai Imax with a wheel chair lift or ramp. We survive on my husband's teaching wage and I work as a yoga teacher which I have been forced to downsize due to Noah's constant care needs. Noah has had a very challenging life and it is truly amazing he is still with us. Other than his family, his true loves are his dog (Hero) and going for a drive.
Please help us keep Noah mobile and help him enjoy the freedom of being able to go for a drive with his family and dog. We are a proud family who rarely asks for help and would not do so unless it dramatically improves the quality of Noah's life.