Everyone for Etta - Supporting Retts

As many of you are now aware Etta has recently been diagnosed with a genetic disorder.

We now know she has Rett Syndrome. The NHS defines this as a rare genetic disorder that affects brain development, resulting in severe mental and physical disability. There is no cure for Rett syndrome, so treatment focuses on managing the symptoms. Etta is likely to need 24-hour care throughout her life.

Leigh and Elliot have already fought to get Etta a diagnosis, they will continue to fight to get her all the support she needs. Having a child with a disability shouldn’t have to be a fight to get the help and support that is needed but they are aware they have a battle ahead. Etta deserves to live the best life she can, she is a beautiful and happy little girl, and we all want nothing but the best for her. Since getting the diagnosis both Leigh and Elliot have been so strong and continue to research to try and get the best for her. Florence is an amazing big sister to Etta and is helpful trying to get Etta everything she needs; she also loves to help with her physiotherapy at home. Etta has the best support system behind her always cheering her on.

The financial implications on the family will be huge, Etta is already receiving private physiotherapy at £100 an hour which she needs twice a week. It’s been suggested that Etta will need support from Speech and Language therapy to help her communicate, physiotherapy to minimise scoliosis, a specialist diet, occupational therapy and lower leg braces. Along with these horse riding, swimming, hydrotherapy and music therapy have been reported as being beneficial. On top of all this, there is specialist equipment she will need such as a chair, standing frame, specialist shoes and bands which will all need replacing as she grows. The family are looking at travelling to America for more specialist treatment.

Leigh and Elliot wouldn’t want to come forward to ask for help with the cost of all of this. Leigh is self employed and loves her job, but Etta and her needs will always come first. This will mean she will not being able to work as much due to appointments and hospital stays. I am asking on their behalf for donations towards helping them with everything Etta is going to need.

I am hoping with a little support from you all we can help make their lives a little easier during these hard times.