Jacob's fight

Getting Jacob the private speech and language therapy he needs

Project aim

Getting Jacob the private speech and language therapy he needs

About the project

I've never been very good at asking for help or support, and this is massively out of mty comfort zone... but i've reached a point where I need to get my son the help he needs, and this is the only way I can do it! So thank you for taking the time to read this....

As most of you will know by now, Jacob suffers from a rare metabolic disease called Mucopolysaccharidosis type 1, Hurler Syndrome. Jacob has undergone a lot of treatment in order to stop the diseases degeneration, however he will always have learning difficulties. At two and a half years old Jacob is very developmentally delayed. One of the main areas he struggles with is his speech. He knows about 5 words and a handful of Makaton signs and can get very frustrated at the fact he cannot communicate himself. He has also been tube fed his entire life, meaning he's never developed any oral skills and doesn't know how to chew or suck and swallow very well.

We currently get support from a Speech and Language therapist on the NHS, however we rarely see her as she's so busy. We have an appointment with her once every couple of months at the moment, which is just not adequate for Jacob's needs. I desperately want to get him the support he needs privately, but a session can cost about £65. Ideally Jacob needs one session a week in order for any development to be made. I'm trying to raise enough money for him to undergo three months worth of private therapy as I know he desperately wants to be able to communicate more. We also need intensive training in feeding if Jacob is ever going to be able to eat properly. Currently he chokes on anything he does eat, which is a risk to his health. He needs support in learning oral skills so he can manage food by himself.