‘If only I knew then what I know now’…

I heard this a lot from parents of children with PWS not long after Robyn was diagnosed. At the time it was really hard to believe. But as it transpired, I found out that they were correct and it is something I can now say to new parents with sincerity. My daughter, Robyn who has PWS, will be 3 next month which I struggle to believe. It feels she was born several life times ago. This morning she was attempting to sing ‘What a wonderful world’ by Louis Armstrong, the words of which, she has in a book. Robyn loves books. She loves life too and is a joy to be around. I look at her and the things she does along with her enthusiasm and it feels like a universe away from those dark days back in late 2018 when we received her diagnosis. She has taught me to be better at living in the moment which is a great life lesson for anyone.

I think and hope, myself and my wife have given Robyn the best chance possible for a good future. We will continue to do so as best as we can. I have no doubt we have been beneficiaries of unprecedented knowledge about the condition, amazing medical staff such as our own Endocrine Doctor, the wonderful Dr Miller and a brilliant, supportive community. I want Robyn to have her best possible life and I want her to have the fundamental life choices the rest of us do which, one day, includes her independence. There is of course a fear at the back of my mind that the debilitating aspects of the condition – particularly hyperphagia – will take hold and dominate her life. But mostly I look to the future with hope. I can’t imagine how I’d feel if there was no research, no pending drug applications and no possibilities for new treatments.

The recent FPWR conference was inspiring. Carbetocin and DCCR have produced strong, viable data which demonstrate they both have huge potential. There are ongoing drug trials which offer further promise along with research which continues to discover invaluable new insights about the condition. Whilst I will continue to live in the moment as best as I can, it’s great to know the present is coupled with hope for a brighter future. Like all parents, I absolutely want the best future for Robyn which is why I continue to support research into PWS.

Robyn on the right with her younger sister
PT works both ways – myself and Robyn