A personal message for parents

There can be few things in the world more devastating than something horrible happening to one of your children. 

Rett Syndrome is especially insidious. Most of our children are born apparently well and healthy; we think everything is going to be ok, we see her changing from a tiny baby, becoming a little person of her own. We have no reason to doubt that every possibility lies before this child that we love.

Nothing could be further from the truth. This diagnosis, the loss of skills and the symptoms it brings will not only irrevocably change her life, it will rob her of the future we expect her to grow into.

In the face of such loss, many parents want to lie down and die. Many simply want to make their child’s life as comfortable as possible. Some are angry. All are scared; scared of what will happen to her next. Scared of how we will manage as she gets older. Scared of losing her. But whilst all of those things we fear seem inevitable, the science behind Rett Syndrome gives us every reason to hope that there might be a different path for our children than the one which this diagnosis has meted out to them. Rett Syndrome has already been reversed in a mouse model of the disorder; even in late stage disease. Every day, scientists funded by Reverse Rett are working on experiments focused on translating these research developments into treatments and ultimately a cure for our children.

This matters to us because we have children with Rett Syndrome too. We have stood where you are today. We have felt the same desperation, the same drive and desire to do something to make it anything other than what it is for the girl that we love. We have felt the same helplessness, knowing that whatever we do, however hard we try, there is really not much we can do to change the course of her condition.

But momentum is gathering. Treatments and cures are on the horizon. Research is expensive; Rett research is largely funded by the private efforts of people who love a girl who means more to them than life itself.

If you are reading this, that’s you. Know that you are not alone. There are families of children with Rett and related MECP2 disorders up and down the country , actually worldwide, who are doing whatever they can to take action to impact the future for their children. Living with this diagnosis doesn’t get easier but you can grow stronger.

Nothing makes you feel stronger than really doing something that you know will make the ultimate difference for the girl you love.

Rachael Bloom, Amber's mum

Co-Founder & Executive Director, Reverse Rett rachael@reverserett.org.uk