GOING MILES FOR MYLES

My son Myles (5) was diagnosed with Interstatial DUP15q (11.2-13.1) in May 2017 after querying an autism diagnosis he received in September 2016.

Our world as a family has changed - even though we have in essence swapped labels, the theat of seizures is now very real for my little boy. I want to be knowledgeable.

We are trying to desperately acquire knowledge of this condition and are heavily reliant upon the amazing charity Dup15q Alliance - an American charity that specialise in this chromosome condition. Where doctors and hospitals in this country are truely amazing, their knowledge is limited on this condition. I am greeted at appointments with information that has been printed off the DUP15q website - my main source of help and information.

For the last year we have paid for private speech and language with the amazing help of my family. Without their help, I am sure Myles would not have done as well as he has. The NHS could not offer exclusive 1:1 help which is what Myles needs to help him with his severe speech delay. This help has made such a difference. We have also booked Myles on a 10 week Saturday ABA (applied behavioural analysis) school in Doncaster in October in the hope of helping Myles become more calm and compliant and extend his sentence structures.

As a family we are seeking your help to raise not only awareness of this condition, but also gain knowledge on this condition by attending the US conference in July 2019. I am desperate to speak to other multi agency professionals across the pond, network with other families whose children have this condition in order to help and empower my son, thus extending his speech.

Speech is something that we all take for granted, and with the right interventions and therapies, this could be a very real skill Myles could acquire.

I am also seeking your help to raise monies for an ipad for Myles to use at school. A lot of speech apps are not android compatible. The ipad would be kept at school for Myles to use exclusively at school.

Please help me, help him.

Lets go 'MILES FOR MYLES'

Thanking you in advance

Heather xxx

(Mother to Myles)