Pindimar boy Kye Richards may look like your average nearly 4-year-old boy, but that could be further from the truth.
Sure he plays with his toys, gets into mischief and does what most boys his age are doing.
But Kye suffers from an incurable genetic disease, the biggest childhood genetic killer in the world, Duchenne Muscular Dystrophy.
Duchenne or DMD as it’s known affects one in every 3500 boys born each year and in rare cases some girls are also affected.
DMD is a muscle degenerative disease, that leads to heart failure.
Kye is now starting to struggle with walking, jumping and climbing, things many of us take for granted.
Most children with DMD are confined to a wheelchair around 8-12 years of age as the disease worsens and they can no longer walk, eventually most boys require a tracheotomy so they can breathe, and a peg feed to eat.
They will struggle to use their upper body limbs and relying on a carer to bath, toilet and feed them.
Time is ticking with Duchenne and every single minute counts.
There are currently treatments on the horizon, however they are yet to go through stringent human trials then will need to get approval which takes years, time these boys and girls do not have.
The life expectancy for those with DMD varies as all cases are not the same, children as young as 10 have lost their battle with Duchenne and some boys in their 20’s are still living (Most of those rely on machines to keep them alive, and quality of life is not something they have).
Kye and his family live in Pindimar and face a very uncertain future with their little boy.
Kye’s parents, Mark and Louise, have a positive attitude to Kye’s disease, vowing to make every minute with their little man count.
Mark, a childhood cancer survivor said, “I only wish Duchenne had a survival rate like my cancer, at least I had a fighting chance, Kye doesn’t get that with DMD.”
Sadly, at this stage DMD is incurable and there are no treatments – each week around the globe families are burying their children.
Kye’s mum Louise said, “The trouble is that Duchenne doesn’t have the awareness it needs, we need to make DMD a household name, the more people who can donate to this cause, the closer we get to saving our son, and all the children who suffer from this heartbreaking illness.”
At present the Richards family have a Go Fund Me page that has been circulating on social networks, however after a month they have not had much success in their campaign, a portion of monies raised will be donated to research, the rest will be put into a fund to aid in Kye’s future care.
If you would like to help this local family, donations can be made at this web address where you can help young Kye in his quest for life. Go to www.gofundme.com/hqquuw9w
For more info on Duchenne Muscular Dystrophy go to www.duchennefoundation.org.au
If you don’t have internet access contact News Of The Area on 0401 308 359 and we will put you in touch with the family.