WIRREANDA Public School held their school cross country event last week, and you would be hard pressed to find a more excited set of parents than those of Oaklan Reed as he crossed the finish line.
Oaklan has a very rare metabolic disease called Mucopolysaccaridosis type 2 (MPS) Hunters Syndrome.
Ten boys in Australia are diagnosed, and there are less than 1000 diagnoses in the world.
Oaklan’s condition means his body doesn’t produce an enzyme.
One of the few treatment options is Enzyme Replacement therapy where every week the children must go to hospital.
For Oaklan, this meant attending Westmead Children’s Hospital in Sydney to have the enzyme administered intravenously at over $10,000 a treatment.
Oaklan started this treatment once he was diagnosed, but it doesn’t treat the damage or progression of the disease to the brain.
Only the second option, a Bone Marrow Transplant, could do that, so a transplant was decided as the best option to save any damage to Oaklan’s brain.
Oaklan and his family put their time together on hold, and he and his mother moved moved to Westmead Children’s Hospital in April 2015 for four months of isolation in the ward and chemotherapy treatment
Thankfully the transplant for Oaklan was very successful but there were times when he was so sick that his family and medical team didn’t know if he would make it.
Emma, Oaklan’s mother, told News Of The Area, “We know that the transplant will definitely improve his quality of time and prolong his lifespan significantly, but the disease is so rare that we don’t have real answers.”
“So, we are focusing on the fact that he is hitting milestones out of the park, and we enjoy each and every one of them.”
“He is a superstar,” she said.
The disease affects all children differently.
For Oaklan, his mobility is different from most kids, his joints and bones don’t move like others, he get sick a lot with pneumonia and his lungs are a little weaker.
“So to see him do a cross country run definitely made me cry with joy,” Emma said.
“To see him write his name is amazing, to see him read is awesome, we just enjoy everything about him!”
By Rachael VAUGHAN