Submitted on Tuesday 23rd April 2013
Published on Wednesday 24th April 2013
Current status: Closed
Closed: Thursday 24th April 2014
Signatures: 464
Lily-Mae for SMA - Prenatal Screening for SMA
Our beautiful darling baby girl Lily-Mae was born 7th April 2009. On 9th April 2010 our world was shattered when she was diagnosed as being terminally ill with SMA Type 1. On 4th March 2011 aged 23 months Lily-Mae passed away peacefully. SMA is a non-curable, non-treatable genetic neuromuscular disorder. Most children with the condition do not make 2 years old. The average age is just 9 months old. It is also statistically the largest genetic killer of children under the age of 2. Approx 1 in 6500 people suffer with SMA. There are around 100 new cases reported annually in the UK. 1 in 40 is a carrier for the defective gene that causes SMA & if both parents are carriers the child has a 1 in 4 chance of having the condition. We want prenatal screening to be introduced so no parent has to go through what we did.
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