MY DISABLED DAUGHTER SAVED MY LIFE!

Now I’m asking for help to save her sight.

Aalaeya is 11 years old and is registered partially blind, globally delayed, and has limited mobility.

She was born with a rare genetic condition called AC02-related Cerebral and Retinal Degeneration, a neurological disorder that affects movement, posture, coordination, balance, and eyesight.

There are only approximately 14 children in the world with this condition, most of whom died in infancy.

As a result, Aalaeya didn’t walk until she was 7 years old. Even now, the combination of her poor vision and balance issues means she falls over often. She also has difficulty organizing her movements and maintaining energy levels.

Unfortunately, this means she is unable to participate in many of the activities enjoyed by her peers and is limited in how she can explore and interact with the world around her.

Aalaeya has a very supportive family, including her three older sisters, who she loves very much. We are doing everything we can to help her overcome her challenges.

When Aalaeya was 5 years old, she was the only other person in the house when I was attacked by my ex-husband and strangled. I screamed out for Aalaeya, and although she couldn’t walk, she crawled to where I was and distracted her father by tapping him on the leg. I was able to run out of the house to safety. She was the angel who saved my life, and seeing her struggle so much with everyday tasks, to learn, and to interact with children her own age is heartbreaking—especially when there are options that could help her.

Aalaeya has recently been able to access Anat Baniel Therapy, a neuro-movement therapy that has already helped her organize her movements more effectively and with her speech delay. However, the therapy costs £750 per month, and as a single, self-employed mum of four, it’s not something my income can sustain. So, I am raising funds for a year's worth of Anat Baniel Therapy, which will be given in 12 monthly blocks.

Speaking to medical professionals, they agree that Aalaeya's first step toward a better quality of life would be to address her vision difficulties, as her lack of sight affects her cognitive and physical abilities. Unfortunately, Aalaeya has optic nerve atrophy, a condition once thought untreatable—especially not through the NHS. Although Aalaeya has access to top specialists in this country, they have said there is nothing more that can be done for her.

Dr. Federov in Berlin is willing to help Aalaeya with his breakthrough treatment for optic nerve restoration, which could improve Aalaeya’s sight by anywhere from 10% to 100%. These improvements would make a huge difference to her life. She would need tests to be done, which come with a fee, as well as travel and accommodation costs. The treatment itself, if she is deemed suitable, works out to approximately £10,000. Techniques like optogenetic vision restoration, which uses light technology and genes to generate a visual response, could give Aalaeya the opportunity to experience light, colors, and shapes.

The third treatment we are considering is stem cell therapy in the USA. If Aalaeya is found suitable after assessment, the therapy would seek to replace the cells affected by her disorder and could potentially reverse her eyesight issues completely. This would cost about £30,000, including tests, accommodation, and travel—an amount that is currently beyond my reach.

Overall, I’m trying to access innovative technology and medical advancements that could provide help for Aalaeya, which wouldn’t otherwise be available to her.

As a single parent, my main concern for Aalaeya is her lack of independence if I am unable or not around to support her. Her sight and mobility are essential for Aalaeya to take care of herself in the years to come.

These treatments give Aalaeya hope for the future. She has had to struggle her entire life, but she never gives up. When I asked her what her goals were for 2023, she said: "To write my name, to walk better at school, and to grow my hair long to my shoulders."

You can help her achieve two out of three of those goals. :)

7.5% of all donations to Tree of Hope in relation to this appeal will be allocated to the general charitable purposes of Tree of Hope to cover our core operating costs.

If we raise insufficient funds, or surplus funds, then the funds will be used, if appropriate, to fund support for our child’s needs in accordance with Tree of Hope’s charitable objects. If in those circumstances we are unable to use all or part of the funds for the benefit of our child in accordance with Tree of Hope’s charitable objectives, then any funds that cannot be used will be transferred to be used for the general charitable purposes of Tree of Hope.