Layla Violet was born on the 28 March 2014, a beautiful little girl and daughter to Sophie and Rob.
Sadly, some weeks later she was diagnosed with SMA Type 1 (Spinal Muscular Atrophy). SMA is a devastating disease and is the leading genetic killer of infants and toddlers.
Type 1 is the most common form of SMA
and the most severe. Symptoms are usually apparent at birth, or during the
first few months of life. Weakness is severe and manifests itself in
difficulties moving, eating, swallowing and breathing. The proximal muscles, or
muscles closest to the trunk such as the neck, shoulder and pelvic girdle
muscles, are most significantly involved. SMA Type 1 babies have floppy limbs
and tongue fasiculations (flickering). Due to the high risk of serious
respiratory problems, most children with this type of SMA die before their
first birthday.
Layla was a happy little girl with a wonderful smile that melted the heart. Sadly at 7 months of age our hearts were broken when she passed away in her mother’s arms.
We opened this Just Giving page in her name “Layla’s Smile” to raise monies for The SMA Trust and for Rainbows Hospice for Children and Young People.
We will continue to organise events to raise funds for charity.
Your kind support would be greatly appreciated.
