Hi thankyou for taking the time to read.

Let me introduce you to Felix, many of you will know him already, he may have told you to “get in your car” or exchanged a cheeky smile with you. Felix is 8 years old, he is funny, charming little boy, he has changed our families lives forever, we have learnt a lot about ourselves we didn’t not know and an inner strength we didn’t not know existed. When Felix was 3 ½ he was diagnosed with Phelan-McDermid Syndrome, this is a chromosome deletion on 22q13, we were all devastated when we heard this and we all had a dark time with endless appointments. In that first year we saw 22 specialists. I threw myself into supporting other families, and assisting in setting up PMSF UK as we all know it today, this was a great healer for me to reach out with other families.

What does PMS mean, this was a great question indeed, it’s so rare, with only 1500 people worldwide diagnosed. Felix has many difficulties on a daily basis, he functions at a 18 month/2 year old age, he has significant communication delays, he has severe sleep disorder, severe behaviour issues, he’s doubly incontinent, he needs 24/7 care, one to one at school, he is a very vulnerable little boy as he has no safely awareness. Felix takes five medicines daily, to help with sleep and his behavioural issues. The future is uncertain for Felix as regressions happen with his syndrome, and he often loses the ability or skills he has, one day is very different to the rest. We cannot do things other families can do, Roxy cannot have friends over, we cannot go to the cinema as a family, or do most “regular” things we all took for granted before, everything is planned, and we are often tired from the daily struggles we have.

We have had a 3 1/2year battle with the council to make safe our home for Felix, currently we are failing him. A couple of weeks ago we has the agreement for this, a huge relief after so long fighting. The garage will be converted into bedroom wetroom for Felix, with a changing table, we are currently changing his nappies on the sofa, which is challenging and undignified for Felix. This will make Felixs home environment safe for him and us in his Forever home. The council will support most of the building works, however there is still some funds to raise to make this happen.

We have many funny stories thanks to Felix, we love him so much, his smile and humour makes the most difficult days more manageable.

If you would like to donate we would really appreciate that, thankyou for taking the time to read

Felix and Family xxxx