Thanks for taking the time to visit my JustGiving page.

We are fundraising for The Jennifer Trust, an amazing charity doing great work in raising awareness of SMA.

On the 20th September 2012 I gave birth to my beautiful baby boy Edward James Luckett. He was 4 weeks premature but healthy. After a few months I started to worry he wasn't doing the usual things a baby should be doing, like reaching for toys, so went to see my health visitor who reassured me he was fine and that if he wasn't sitting up or rolling over by 10months to go back.

After a little while I decided I wasn't happy with that and went to see my GP who straight away referred me to the John Radcliffe hospital for more tests. 

In April 2013 we got the very heartbreaking news my beautiful baby boy had a life shortening illness known as Spinal Muscular Atrophy Type 1 also known as SMA. 

This was a condition I had never heard of, so when I got home I Googled it and found out all the information I needed from The Jennifer Trust.

SMA is a rare genetic disease and is a neuromuscular condition that affects the nerve cells in the spinal cord causing problems with the transport between the brain and muscles which prevents movement due to lack of stimulation and muscle waste (atrophy).

There is varying degrees in which this can be diagnosed BUT NO KNOWN CURE. Type 1 is the most severe form affecting babies as young as 6 months. This sadly means they develop breathing difficulties and feeding problems. Babies with type 1 SMA will never be able to hold their head up, sit unaided, crawl or walk! Most don't live to see their 2nd birthday.

Sadly on the 14th august 2013 my gorgeous baby boy lost his fight with SMA.

This is why I wish to raise money and awareness for The Jennifer Trust, I believe this to be a very worthy cause which provides support for both the child and their families.

By raising money for this charity we are helping them to keep raising awareness and helping them supporting families.

All donations and help will be much appreciated and will go straight to the charity.