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Rafe was born January 2022, unbeknown to anyone until his birth that Rafe had complications that meant he’d need to stay in NICU for 9 weeks to help him breathe independently  

Rafe was born with hypotonia (muscle weakness) unable to feed independently and has required an NG tube all his life. He suffers with severe chest infections during the to date he has had 6 admissions to HDI with RSV/pneumonia. We still don’t have a diagnosis for Rafe but we do know he is a very bright boy with the ability to achieve anything with the right help to reach his goals. Cognitively Rafe is close to meeting his milestones and gets very frustrated by his physical disabilities so we are trying to support a more intensive therapy program to help him achieve his full potential. 

Currently we are fundraising for a hydrotherapy pool (as there’s very limited funding for this via the NHS and he has completed his 6 sessions). Hydrotherapy helps to strengthen and improve muscle tone, Rafes hypotonia is affecting his mobility and he is unable to walk and gets frustrated by this.

We as a family are willing to dedicate all our time and efforts to support Rafe, as we have the last two years of his life. We just need the equipment to be able to do this. 

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