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Hello,
THANKYOU for looking at the site for Lilly Mae Skidmore. As we
launch this appeal to make life a little easier for Lilly who will be 5
in October, and 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,
Thank you.
Lilly Maes Appeal would Like
to Thank Oliver McNeil from
Legend
photography for allowing us to Use the photos.
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