Goal Reached 05/09/2012
Cerys was born in January 2006 after a healthy pregnancy appearing to be perfect! It was not until around 6 months when she was not meeting milestones that I started asking the doctor if she was okay.
Cerys was diagnosed through a blood test with Angelman Syndrome. Angelman Syndrome (AS) is a very rare (estimated 1 in 15 000) neurogenetic disorder characterized by a severe global developmental delay.
People with AS (or “Angels”) have little or no verbal skills, poor gross and fine motor skills, and possible seizure and sleep disorders. However, Angels do have a unique characteristic – they have a happy, pleasant demeanour with a wonderful smile and contagious laughter.
Cerys at the moment does not walk, cannot speak, and suffers from seizures.
We requested two items for Cerys’ safety and development. As Cerys has no sense of danger she requires seating, which not only offers her support but also requires a safety belt. We are currently using a wooden high chair, which Cerys has managed to tip over by pulling herself closer to other items. It is a constant concern when she is in her high chair and cannot be left alone for a second.
The second item we would like for Cerys is a trike. This is not purely for her recreation for her to enjoy the outdoors with her brothers. This is part of her physical therapy, it teaches her coordination while strengthening her muscles, in the hope one day to have her walk independently.
We heard about your wonderful organization through our own physiotherapist, the gifts you are giving these children are absolutely amazing. If at anytime there were a way that we can help you our family would be honoured to do so.