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Eddie’s Campaign

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Eddie, has a rare genetic condition which bleeding on his brain in utero, leaving him with a severe brain injury. Consequently, Eddie has various neurological conditions, including cortical vision impairment (he is registered as functionally blind), Grade 4 Cerebral Palsy affecting all four limbs, intractable epilepsy (West syndrome) and global developmental delay. West syndrome, also known as infantile spasms, is a rare and severe epilepsy syndrome and it has had a truly devastating impact on his development.

Eddie’s family decided to join the Tree of Hope to try raise funds to help manage the ongoing costs associated with Eddie’s needs, including neurological rehabilitation. He has a private physiotherapist and takes part in weekly equine therapy sessions and swimming therapy which he loves. The family have also been recommended from NHS physiotherapists and OT about various pieces of vital equipment that they suggest Eddie would benefit from, but which unfortunately they cannot provide.

Eddie is three and a half now and reaching some positive developmental milestones which we strongly feel is due to all his hard work. His core strength has improved as he can sit unsupported for up to 30 seconds. He can stand up with support for a few seconds and is working hard on his kneeling too. He has learnt to operate a basic switch to turn his Bugzi chair in a circle and is getting the hang of riding his horse Merrygo!

Eddie and his Mum Ilmarie have featured in the National News this year and on ITV’S This Morning challenging the use of legalising CBT oil: see Ilmarie on This Morning here >>

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