Grace was diagnosed with SMA type1 on the 30th August 2018 at exactly 4 months old

Spinal Muscular Atrophy is a horrible disease which takes the lives of many and is the number one genetic death in infants. Those who unfortunately have SMA have difficulty achieving daily tasks we take for granted, such as the ability to walk, eat and breathe. There are four primary types of SMA and Type 1 affects babies under six months and is the most serve type meaning babies rarely survive the first few years of life.

Grace is now on a treatment of drugs and will be for the rest of her life. These drugs wont cure Grace but hopefully they will slow down progression of the disease and in some cases, improve things.

Now we have no idea what the future holds for Grace, and her family are taking each day as it comes and enjoying every second together.

We are taking part in the matlock raft race to raise money for Grace and help her live the best, most comfortable life possible and make memories for her family to treasure. Money donated plans to be used for things like hydrotherapy sessions once Grace is home from hospital, this is the best form of therapy for Grace to excercise the little muscle she has, unfortunately this is not funded by the NHS.

Please donate anything you can to help support Grace and her family. The raft race will take place on the 26th December 2018 please come along to cheer us on!