A different kind of form


by Beth Johnsson

Filling in forms is part of the parcel of parenting a child with additional needs. Some are harder than others, all are an extra task on a long ‘to-do’ list, most feel fairly ineffective – more of a tick-box exercise than anything which will really make a difference.

The Taysha Gene Therapies survey which came out this month felt different.

There’s no question that it was hard to fill in, from an emotional perspective as well as in terms of accuracy. Could I really say which symptoms affect Hannah’s quality of life the most when they are all so entwined? How could I summarise in 1-2 lines how those symptoms have impacted her life? Did I really want to acknowledge that 11 of the 13 listed symptoms affect my family’s lives severely? 

Seeing these things in black and white is never easy – a brutal ‘big picture’ of all those individual things which, over the years, have become our ‘norms’.

But for once, there was a better, brighter ‘big picture’ in sight too. A breath-takingly exciting purpose behind the form-filling trauma.

The responses to the Taysha survey will be used to shape a potential gene therapy clinical trial for Rett Syndrome. The questions come from a genuine need to understand more about the experiences of families in order to inform a trial which could potentially transform the lives of those families.

Knowing this purpose made completing the survey an experience of hope, rather than despair. Sharing that painful reality with people who could help change it, made it less painful, more purposeful. The emotional impact of seeing the difficulties in black and white was overridden by the overwhelming emotional impact of seeing ‘gene therapy clinical trial for Rett Syndrome’ in black and white too.

Back when Hannah was diagnosed in 2010 those seemed like the words of a fairytale; now they are the words of science.

So if these are the forms which are now part of the parcel of parenting a child with Rett Syndrome, bring them on . .

The UK Rett community has now delivered over 118 responses to the Taysha survey, exceeding our target. If you still want to have your say, you can complete the survey here until July 19th.