Raise for Rafe

Rafe was born with two rare chromosome disorders, Phelan McDermid Syndrome and Duplication of 7q. Both of which cause global development delay, low muscle tone, little or no speech and learning difficulties. Recently it was also discovered that he suffered brain damage due to lack of oxygen some time around his birth. 
Rafe is now 5 years old and is unable to independently  sit, stand, walk or talk. However we have seen some progression as a result of both physiotherapy and speech therapy which he receives through a special needs school. 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. 

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. It will help towards sensory toys which cost a small fortune because they have been adapted. As well as physical hold backs one of his biggest difficulties is communicating as he is unable to speak. So 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 aloud. 

We are so grateful for Ryan and Dean Cole (Coles Bros Limited) in 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 sons future and will allow us to build a stronger path for him towards a more independent life.