KIRSTY AND PAUL WHITEHEAD – ADELAIDE RACE DIRECTORS
Neurofibromatosis touched our lives when first Shelbie and then Jackson were diagnosed with it. Every day as Parents Paul and I watch our 2 children struggle through so many challenges and live in constant pain, whether that be from the nerve pain or the pain from the scoliosis in Jackson’s back.
I have watched our boy fight for his life 7 times, now he’s fighting to keep his sight because of a brain tumor. He has a long list of learning difficulties caused from the NF, he faces the possibility of having a rod put into his spine and nothing in life is simple not even a little bump to the head.
Our Shelbie has an intellectual disability and is facing her mortality as she has an inoperable hole in her skull that is subtly getting bigger.
Our family lives a life of uncertainty as NF has no boundaries and is like a ticking time bomb. To our 4 cherubs spending days at the hospital is their normal. We support each other has a family and together we are now wanting to do something positive and raise awareness in Australia. We honestly don’t know how long we have Shelbie and Jackson in our lives and instead of feeling helpless as a Mum and as a family we can create memories, whilst raising much needed funds for the CTF to find a cure and awareness.