Alfie’s fund
Donation protected
We’ve been asked by numerous people to do a go fund me page so that people can help our little hero have the things he so desperately needs but before we go there let me tell you a bit about him
Alfie was diagnosed with a rare genetic disorder at 6 weeks old, pallister-killian syndrome, that rare that there is less than 300 people world wide with it, 34 in the uk and Alfie seems to be the only one in Kent, his syndrome comes with a host of complex problems, no muscle tone (hypotonia) , so they don’t think he will able to sit, stand or walk, he has a very slim chance of talking, a hole in his heart, heart murmur and is NG tube fed as he has an unsafe swallow, he’s going upto London in September to have a peg feed inserted and his hernias repaired, he also has global developmental delay and as we recently learnt he’s visually impaired (only reacts to bright lights) and has left sided conductive hearing loss...so as you can imagine his needs are quite great, the NHS are of course fantastic but don’t provide everything, things he so desperately needs are a special buggy one that can support him so he doesn’t flop, a special supported car seat, it would also be lovely to have a sensory corner at home for him with a sensory tent and lights and sounds as he doesn’t play with toys, so any money raised will go towards these things and anything left over will go towards home improvements to make his life easier, a dropped curb so we can have a drive way and mobility access into the house
we of course are very proud people and would never ask for help but his needs are so great and we just want the best for our brave little soldier so any help given would be greatly appreciated no matter how big or small and thank you you all for your love and support
Alfie and his army xxx
Alfie was diagnosed with a rare genetic disorder at 6 weeks old, pallister-killian syndrome, that rare that there is less than 300 people world wide with it, 34 in the uk and Alfie seems to be the only one in Kent, his syndrome comes with a host of complex problems, no muscle tone (hypotonia) , so they don’t think he will able to sit, stand or walk, he has a very slim chance of talking, a hole in his heart, heart murmur and is NG tube fed as he has an unsafe swallow, he’s going upto London in September to have a peg feed inserted and his hernias repaired, he also has global developmental delay and as we recently learnt he’s visually impaired (only reacts to bright lights) and has left sided conductive hearing loss...so as you can imagine his needs are quite great, the NHS are of course fantastic but don’t provide everything, things he so desperately needs are a special buggy one that can support him so he doesn’t flop, a special supported car seat, it would also be lovely to have a sensory corner at home for him with a sensory tent and lights and sounds as he doesn’t play with toys, so any money raised will go towards these things and anything left over will go towards home improvements to make his life easier, a dropped curb so we can have a drive way and mobility access into the house
we of course are very proud people and would never ask for help but his needs are so great and we just want the best for our brave little soldier so any help given would be greatly appreciated no matter how big or small and thank you you all for your love and support
Alfie and his army xxx
Organizer
Heidi Louise Griggs
Organizer
