Why am I doing this?

Amber is a close and loved family member who has Rett syndrome. She is now 27 years old who lives between a wonderful care home and her family home. She is non verbal, unable to walk and requires a huge amount of physical care.

However, she also really loves a party, especially when ABBA is on, gets excited about going out and is very mischievous, especially at breakfast time with her friends where she often has to be separated from them! Amber largely communicates with her very green eyes and when she looks at you, she looks through you until you feel she can see your soul.

What is Rett Syndrome?

When she was a small child, I remember Amber walking and having other forms of expression. The main cruelty of this disease is that children are born like any other baby but slowly start regressing between 18 months and 2 years old. Rett Syndrome is a Neurological condition which predominantly affects girls. Later symptoms are severe difficulties in breathing and swallowing and they have multiple disabilities and medical complexities for life.

Living with Rett Syndrome and the Reverse Rett charity

Imagine the confusion, distress and helplessness as a parent. Rachael is her Mother who is equally dear to me. Despite all the basic support for Rett and connections to other parents, Rachael could not accept that there was no cure and pledged that she would do whatever it took to help Amber and other girls in the future to have this disease reversed. 13 years ago, she set up a charity from her home to do just that.

She has almost done it! During creating a team of Ambassadors and Trustees and raising over £6 million, I have watched her tirelessly campaign and organise high end events and galas with celebrities and significant medical professionals (for example, Sir Professor Adrian Bird), attend high profile medical conferences in the US, appear in radio interviews and raise awareness worldwide through many other platforms.

This is not a charity raising money simply to support families with Rett Syndrome, this charity has funded ground breaking research which has led to the faulty gene actually being reversed when trialled on mice and recently, trials have now begun on girls with Rett Syndrome. Significantly, this kind of gene therapy may well pave the way for other gene therapies, so to be a part of this at such a unique stage of discovery is very exciting.

https://www.reverserett.org.uk

My Challenge

We have organised a group (called the Ice Maidens!!) of friends and families of girls with Rett Syndrome to join the ‘Iceland Fire and Ice Challenge’ 30th August, which is a 3 day trek and volcanic adventure around the most difficult terrain that will require a lot of training and endurance whilst camping at night under the Nordic stars.

https://www.actionchallenge.com/overseas-trips/iceland-fire-ice-trek/

We need to raise at least £2,000 each, so please help and pass onto anyone else you think may be able to sponsor me too. I am aware I need to do more than just ask for sponsors for this amount, so I am also thinking of additional events I can do. For example, I will be selling tickets to host a Lebanese dinner party but any other ideas anyone may have would be most welcomed!

I am a therapist in the NHS mental health service and have worked with two families now over time, who also have daughters with Retts Syndrome. Their struggles and hopes for the future free of Rett Syndrome echo that of Amber’s family and of her step sister, Beth.