Isabel was born "seemingly" perfectly healthy, at 11 months old my cousin and her husband noticed she wasn't bearing much weight and wasnt interested in crawling etc- however was sitting, feeding, rolling amazingly well. They mentioned it to the dr just to be sure as every parent wants their child to be healthy. One appointment with a neurologist and pead at 15 months they were taking bloods for genetic testing. The main thoughts were that she had low muscle tone and needed physio, however 4 weeks after the bloods, my cousin and her husband had a hand written letter asking them to go straight to hospital as they had the results. They were told that their beautiful girl had this genetic, deterarating, life limiting condition that most don't live past 2! Roll on a year and half after diagnosis and she is SMAshing SMA.

Basically, Issy has inherited a faulty gene that stops the motor neurons making it any further than her spine. Isabels physical ability will only get so far- she is able to sit- isabel can not stand,walk, kneel or crawl! She can roll occasionally and is able to touch her head with her hands, however, the physical abilities she has worked so hard to gain, she will eventually loose. This will include eating, breathing, swallowing, sitting, movement of fingers. This also affects other aspects of her life, she has developed scoliosis (curvature of the spine) and a simple cold can be life threatening!

 No matter what is put in her way, weekly appts in 5 different hospitals, meeting 20ish different professionals, daily physio, it really doesn't phaze her she is so bright and such a fun loving little girl that, no child should be told that they are being robbed of the physical ability!! We need a cure!!

I hope that you can find it in your heart to donate to this fantastic cause of finding a cure so that children do not have to have their childhood robbed and so that parents are not robbed of their children.