Hi my name is Chloe and I’m fundraising for my daughter Delilah-Mai. She is a 2.5 year old peppa loving toddler. Delilahs smile will light up any room! When Delilah was a baby she developed multiple types of seizure including a rare seizure called infantile spasm. Up until 4 months she had been developing normally, starting to sit and smile and roll over. Once she started having seizures her development started to go backwards and she lost all the skills she had learnt. We spent months in hospital having lots of tests and scans. Delilahs most recent scan has shown lesions on both sides of her brain and that her skull has fused to soon both requiring brain surgery at specialist hospitals. Alongside her neurological illness Delilah has bradycardia, microcephaly, visual and hearing loss, low muscle tone, profound developmental delay and is tube fed (awaiting a peg) due to an unsafe swallow, she has spent lots of time in hospital with pneumonia and chest infections. Delilah is now under hospice care and we have been told she will not live out of childhood. We are looking at treatments in other countries but as you can imagine this is pretty costly. Our hope is to give her the very best while she is here with us. She loves horse riding physio which we have to do privately and lots of the seating and equipment she needs to give her a content life also need to be purchased privately. Her team have been great at helping us access lots of things but a lot of the equipment for very complex children is private and very expensive. If you could help in anyway we would be very grateful.
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