Jane Bannister
Ava Jane's Onesie Walk
Fundraising for The SMA Trust
Story
Thanks for taking the time to visit my JustGiving page.
Beautiful Rowan Macie Poole was born on 26 May 2011, Rowan passed away at just under 18 months old, 8 months after been diagnosed with SMA type 1b.
Rowan delighted everyone she met and enjoyed her short life to the full. She made the world more fun, more interesting, more beautiful and above all, more joyful for everyone close to her.
She will never be forgotten.
The childrens onsie walk is to raise money for the SMA Trust, Spinal Muscular Atrophy (SMA) is a genetic condition, there is currently no cure. One person in every forty is a carrier of the defective gene that causes SMA. If both parents are carriers their child has a 1 in 4 chance of having the condition. This would usually be due to the SMN1 (Survival of motor Neuron) gene on chromosome 5 been altered or missing completely. SMA is autosomal recessive which means, for a child to be affected BOTH parents must be a carrier.
Sadly it is estimated that SMA affects approximately 1 in 6,000-10,000 (all types of SMA)
Although a baby with SMA 1 may have limited movement their brains are completely unaffected, they still enjoy many things just like an able bodies baby.26.05.2011 - 23.11.2012