Founded in May 2011, The Lily-Mae for SMA Trust was established to raise awareness of Spinal Muscular Atrophy and to raise much needed funds into research for a cure. Spinal Muscular Atrophy, or SMA as it is also known, is a genetic neuromuscular disorder which results in progressive muscle weakness. It is non-curable and in some cases can be fatal.
1 person in every 40 is a carrier for the defective gene that causes SMA and if both parents are carriers the child has a 1 in 4 chance of having the condition.
Approximately 1 in 6500 people suffer with Spinal Muscular Atrophy. Data shows there are around 100 new cases reported annually in the UK and around 1 in every 11000 births in the US which means 1 baby born alive per day!
Although there are 4 types of SMA the most severe is Type 1. Most children with Type 1 SMA do not make 2 years old and the average age is just 9 months old. It is also statistically the largest genetic killer of children under the age of 2.
Our beautiful darling, extremely intelligent 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 (also known as Werdnigg Hoffman Disease). On 11th April 2010 we nearly lost her to pneumonia but she proved she was every bit our little fighter and survived against the odds. Lily-Mae then lived another 11 months and despite not being physically able she was as sharp as a button and very smart with a fantastic vocabulary. She loved singing and music and loved playing with her big brother Archie.
Sadly on 4th March 2011 aged 23 months Lily-Mae passed away peacefully. Lily-Mae had a smile that could light up the darkest of places and a face that could make the worst of times bearable. Most of us like to believe our children are destined for great things but Lily-Mae truly was and continues to be. The joy and happiness she brought to everyone's lives is unrivalled. Some people could live 100 years and not make the impact she has made in her short little life.
We want Lily-Mae's legacy to be to raise awareness of this condition. We had not heard of SMA until when Lily-Mae's diagnosis and although we are not quailified in any particular field we are loving parents with an extensive knowledge of the condition and of dealing with the condition on a day to day basis.
Our supporters can donate by
Don't forget to stop by and follow us on Facebook
You can also find us on Twitter @LilyMae4SMA
1 person in every 40 is a carrier for the defective gene that causes SMA and if both parents are carriers the child has a 1 in 4 chance of having the condition.
Approximately 1 in 6500 people suffer with Spinal Muscular Atrophy. Data shows there are around 100 new cases reported annually in the UK and around 1 in every 11000 births in the US which means 1 baby born alive per day!
Although there are 4 types of SMA the most severe is Type 1. Most children with Type 1 SMA do not make 2 years old and the average age is just 9 months old. It is also statistically the largest genetic killer of children under the age of 2.
Our beautiful darling, extremely intelligent 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 (also known as Werdnigg Hoffman Disease). On 11th April 2010 we nearly lost her to pneumonia but she proved she was every bit our little fighter and survived against the odds. Lily-Mae then lived another 11 months and despite not being physically able she was as sharp as a button and very smart with a fantastic vocabulary. She loved singing and music and loved playing with her big brother Archie.
Sadly on 4th March 2011 aged 23 months Lily-Mae passed away peacefully. Lily-Mae had a smile that could light up the darkest of places and a face that could make the worst of times bearable. Most of us like to believe our children are destined for great things but Lily-Mae truly was and continues to be. The joy and happiness she brought to everyone's lives is unrivalled. Some people could live 100 years and not make the impact she has made in her short little life.
We want Lily-Mae's legacy to be to raise awareness of this condition. We had not heard of SMA until when Lily-Mae's diagnosis and although we are not quailified in any particular field we are loving parents with an extensive knowledge of the condition and of dealing with the condition on a day to day basis.
Our supporters can donate by
- LILY-MAE'S ANGEL FUND PAGE - Click Here
- Texting LSMA74 followed by an amount - £1, £2, £3, £4, £5, £10 to 70070
Don't forget to stop by and follow us on Facebook
You can also find us on Twitter @LilyMae4SMA