🌟 5-15 OCTOBER: Mt Kilimanjaro, highest peak in Africa 19,340ft 🌟 

Many of you know that my daughter, Eliza, has Rett Syndrome. She was diagnosed at the age of 3 and is now 12 years old, and has just started high school. 

She was born seemingly healthy and developed normally for the first two years of her life, but then stopped reaching milestones. After over a year of many tests including brain scans and genetic blood tests, we were told she has Rett Syndrome, an incurable condition which occurs “de novo” and can affect any baby (mostly girls). 1 in 10,000 girls born are affected.

She slowly lost the ability to talk, walk, wave, point and use her hands. She started to cry uncontrollably. We were confined to the house and unable to go anywhere with noises that might upset her.

She eventually learnt to walk at the age of 5, after intensive physio. At 7, she started falling and it turned out that she had developed epilepsy and had up to 10 seizures a day. She is now only able to walk a few steps,  needs 1:1 support to do everything and remains trapped in a body that does not work properly. She also has breathing problems and bouts of intense anxiety. 

Every year things get harder for her and we watch her deteriorate a little more. In 2020 both lungs collapsed and she ended up fighting for her life in A&E, then spent 5 weeks in hospital, mostly in intensive care on a ventilator. She had two operations and a long recovery after this, but due to her condition she is always at risk of developing complications. This August, she was again rushed to A&E after having a 13-minute seizure.

Reverse Rett is the only charity funding research into genetic treatments and medications which might one day help her to have a better quality of life. Gene therapy trials may be starting in the UK this year, which gives us hope for her future. Much of the gene therapy has been developed by scientists at the University of Edinburgh. 

At 19,340ft, Kilimanjaro is Africa’s highest mountain and I will be climbing it with 6 of my friends from North Berwick and Dunbar. Not everyone knew each other before signing up, but they were all keen on the challenge, and we will soon be spending a lot of time together!

The climb involves 7 nights of camping and a tough ascent, with 49% oxygen (compared to sea level) at the top, and temperatures around -11 degrees the night before the summit. The final ascent will be at night, reaching the summit at sunrise.

Please donate if you can ♥️