21/12/2018

Just as they are

By Emily Marsden


‘I wouldn’t change her for anything’

Since Daisy was diagnosed with Rett Syndrome, I have begun to notice a similar phrase or sentiment cropping up amongst parents of other girls with Rett or equally complex disorders. I recently saw some parents debating this idea online and have been stuck thinking about the belief that we simply accept our child ‘just as they are.’

Perhaps it’s a line people say without putting much thought into, or perhaps some parents truly believe it.  But the more I think about it, the more it begins to irritate me and I wanted to explain why. Daisy is just about to turn 4, she has been in hospital for the last 2 months.

Her seizures are so out of control that it has not been safe to take her home. In 2 months we have seen her lose her ability to sit independently and to eat orally.

What few skills Rett Syndrome had left her with were taken from her within days. She is now tube fed over a continuous sixteen-hour feed and is spending most of her day lying in a hospital bed as she is so sedated from emergency seizure medication.

I have watched her cry in pain on a daily basis, seen her max out her emergency medication on countless occasions because the seizures just won’t stop, and endured many sleepless nights together because she is so uncomfortable in her own body.

I tend to think of myself as a positive person, and as much as I can, I try to be optimistic about Daisy’s recovery from this. But realistically I have to accept the new reality of life with ‘intractable epilepsy’ and the many complexities Rett Syndrome has thrown at Daisy.

So why would I not want to change this? I have often found myself thinking about this question from my own perspective rather than Daisy’s. If I was in Daisy’s shoes, what would I want?

At the very least I would want to be able to relax in my own body, get through a week without having to be sedated from a cocktail of rescue medications and have some freedom to move around as I please.

Without a drastic breakthrough in research I do not believe any of this is possible for Daisy. I do not accept that this is the best quality of life that she could be leading whilst there is still so much to discover in scientific research.

I have been supporting the work of Reverse Rett from virtually the first moment Daisy was diagnosed. It is not because I do not love Daisy ‘just how she is’ and it’s not because I am not willing to adapt our life and hers to enable her to live as fulfilling a life as possible given all the limitations that Rett Syndrome has forced upon her.

I do believe that with the right funding and time, we will find better treatments for Rett Syndrome, and hopefully one day soon a cure. I am unwilling to accept that this is the best it can be for Daisy and for me science and research is one of the most realistic and productive ways to improve the life of girls like Daisy.

Daisy has brought our family so much happiness, and we could not love her more.

But I would change her, not who she is, but what she has to endure every day whilst suffering the cruel reality of Rett Syndrome.