This is a fund so close to our hearts...our 4 year old beautiful twin boy Noah was diagnosed with MD in October 2014 at the age of 3.
There are many different forms of this condition which mainly affects boys carried by the X chromosome. The milder form known as Becker’s down the chain to Duchenne, it is unfortunately Duchenne that Noah has been diagnosed with.
The stats tell us that boys with this condition unfortunately stop walking in their early teens, which results in the use of a wheelchair. As Noah grows into an independent adult, he will need the use of a wet room and possibly an adult size lift to accommodate a chair.
Occupational Therapists come into our home to assess and advise us on home alterations or the possibility of moving somewhere to accommodate Noah's needs.
To look at, Noah is our beautiful, lively little mischievous boy, wrestles with his older brother Joe and gets into mischief with his twin sister Avah and older sister Evee.
As he continues to grow, Noah will continue to get stronger, by the age of 6-7 it is here he will start to Plateau for a while and hopefully this is where the drug that is in its final trial stages will come into operation and delay the effects of this disease. This drug is of course fantastic and much needed news to us.... a silver lining.
We have set up a Trust Fund for Noah and we are hoping to donate to the MD charity also.
As a family we are very grateful for all support and donations received and we thank you from the bottom of our hearts.
Sally, Steve, Joe, Evee, Noah and Avah.