Parents of Hemel Hempstead boy with two rare disorders want to help him communicate using his eyes

The parents of a boy, with two rare chromosome disorders, are raising money for a device that uses technology to help him communicate

Wednesday, 5th February 2020, 4:59 pm

Matt and Alexandra Daly, from Hemel Hempstead, set up the go fund me page to raise money to help their son, Rafe, who has Phelan McDermid Syndrome and Duplication of 7q, both of which cause global development delay, low muscle tone, little or no speech and learning difficulties.

The five-year-old is unable to independently sit, stand, walk or talk, but the family has seen some progression as a result of physiotherapy and speech therapy, which he receives through a special needs school.

Alex said: "The money we are trying to raise will benefit him greatly, it will pay for equipment to help him with daily life, additional therapy outside of school hours as well as helping to pay towards a carer.

Rafe's parents are raising money to help

"It will help towards sensory toys which cost a small fortune because they have been adapted.

"It was recently discovered that he suffered brain damage due to lack of oxygen some time around his birth.

"It has also become more apparent, not only as Rafe has got older but also through research carried out that he is aware of those and the things around him but is trapped and held back by his disabilities.

"One of Rafe's biggest difficulties is communicating as he is unable to speak, we are looking into a device that will be able to assist Rafe in this by using technology that tracks eye movement and giving him a voice that would speak out loud.

"It is like a tablet device and costs around £4,000, he is learning to use it at school and is getting on really well with it."

Hemel Hempstead brothers Ryan and Dean Cole, of Cole Brothers Heating and Plumbing Limited, work with Matt and decided to help the couple reach their target by taking on the Hackney half marathon in May.

Ryan said: "I'm excited but nervous, I've never done anything like this before and to go from doing hardly any exercise to training for a half marathon is challenging, it doesn't really help that my brother is fit as a fiddle and runs 9 miles for fun, but we are going to do it and try and raise awareness and as much money as we can to help Alex and Matt.

"Dean and I do our bit for charity and this time we thought let's try and help someone closer to home.

"Matt works with us and he is a great guy, we see on a daily basis what they go through as a family and the struggles they have but they are all so positive.

"Matt always has a smile on his face and his attitude is great.

"Rafe has such a rare condition and we hope that this opportunity we have to raise money for the family, can really help them.

"The family are positive and an inspiration to us."

The half marathon is in Hackney on Sunday, May 17.

Alex added: "We were going to hold a fundraiser for Rafe, we are finding the expenses more and more at the moment, and then Ryan and Dean said they wanted to do the marathon and raise money for Rafe.

"We are so grateful for Ryan and Dean for supporting our son by running the Hackney Half Marathon.

"Raising this money for Rafe and receiving such generosity gives us so much hope for our son's future and will allow us to build a stronger path for him towards a more independent life.

"We are also hoping to raise awareness of Rafe's condition, we have not met anyone in the UK who has the same two chromosomes, it is really rare, there are two people in America but none here, it would be great to meet someone in the UK so that we can get in touch with them."

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