For Vikki, James and Lilly
Lilly Mae Skidmore has a very rare chromosomal condition called 17q21.31 microdeletion syndrome, Lilly is 1 of only a handful of children in England with the condition, and only 63 worldwide.
Due to this syndrome Lilly has severe hypotonia, hypermobility, is visually impaired, has severe global developmental delay, a low immune system, epilepsy, Asthma & other respiratory problems, is hypersensitive to sound, and neurological problems including PVL brain damage and scarring to the brain, heart problems, a type of autism called Sensory processing disorder and CVI to name a few of her health concerns!
Lilly has many extra needs to the average child, and not everything is available on the NHS, because either she is too young, doesn’t fit in with certain illnesses, or the money is simply not available. She needs various pieces of equipment for her physio and these take up lots of room, so to have some extra space in the form of a little lean to room or something similar, would be great, also because of her poor sight she would benefit from an area where she can access sensory equipment to stimulate her deteriorating eyes.
We don’t know how her needs will change as she grows, so to have funds available would take some of the worry away. Should our fundraising exceed our needs, we will donate any remaining funds to Bluebell wood children’s hospice where Lilly goes for respite, Jeans for Genes, Unique & the Brainwave therapy centre where Lilly goes for intensive therapy.
To find out more about Lilly, click on the link http://www.lillymaesappeal.com