Story
As you all know im lazy and don't do much if any exercise, especially RUNNING! But this little girls story really touched my heart, so I've decided to do something about it.
On Sunday 13th July, I will be running my first ever 10k race to help speed up treatment for Rett Syndrome & MECP2 disorders.
I would really appreciate it if you sponsored me on my first ever race for this amazing cause to really help make a difference to Lily & many other girls like her.
Please take a moment to read Lily's story and watch her video.
Thank you !!
Until her first birthday, Lily was like any other little girl - happy, loving and desperate to explore the world around her. Then lthings started to change - she lost her speech and her interest in life. Lily was in pain physically and emotionally and no one could give any answers.
Shortly after her second birthday, Lily was diagnosed with Rett Syndrome. A tiny mutation to a single gene has condemned her to a life of profound disability and total dependence. Lily is locked inside her body, unable to communicate. There is no doubt that it is one of the cruellest syndromes and, for her parents, the hardest thing is knowing that things will get worse. Lily faces the prospect of epilepsy, severe spinal curvature, life-threatening breathing problems, feeding difficulties and attacks of acute anxiety.
But there is hope. Rett Syndrome has been reversed under laboratory conditions. Scientists predict that it will be the first curable neurological disorder. The only thing holding back a cure is money. Researchers are wholly reliant on private donations from people like you. As a family Kerry and Colin have watched their brave little girl fight with determination each and every day.
Please help me, to help them, to help her.
For more information about Lily and her Journey with Rett Syndrome please watch this video:
Please donate here, or just text LKLA83 & your amount to 70070.
It can be as little as £1, its for a great cause.
Thank you
Luke