Dawn Morton-Young
Help Aalaeya See and Walk Better!
Fundraising for Tree of Hope
Story
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 with limited mobility.
She was born with a rare genetic condition discovered in 2012 called AC02 related Cerebral and Retinal Degeneration, a neurological disorder which affects movement, posture, coordination, and balance, and eyesight.
There are only approximately 14 children in the world with this condition the majority of whom died in infancy.
As a result, Aalaeya didn’t walk until 7 years old, and even now the combination of her poor vision and balance issues means that she falls over often, she also has issues ordering her movements and maintaining energy levels.
Unfortunately, this means that she is unable to participate in many of the activities enjoyed by her peers and is limited in the way she can explore and interact with the world around her.
Aalaeya has a very supportive family, including her 3 older sisters who she loves very much, and we are doing all we can to help her overcome her challenges.
Aalaeya has a very supportive family, including her 3 older sisters who she loves very much, and we are doing all 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 that saved my life and seeing her struggle so much to do everyday tasks, to learn, and to interact with children her own age is heartbreaking - especially when there are options out there that could help her.
Aalaeya has recently been able to access Anat Baniel therapy, a neuro movement therapy that has already helped her with organising her movements more effectively and with her speech delay.
The therapy cost £750 per month and as a single and self employed mum of 4, it’s not something my income can sustain - so I am raising funds for a years worth of Anat Baniel therapy which will be given in 12 monthly blocks.
Speaking to medical professionals, they agree Aalaeya's first step towards 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 thought untreatable until recently and definitely not through the NHS, although Aalaeya has access to top specialists in this country, they have said there is nothing that can be done for her.
Aalaeya has recently been able to access Anat Baniel therapy, a neuro movement therapy that has already helped her with organising her movements more effectively and with her speech delay.
The therapy cost £750 per month and as a single and self employed mum of 4, it’s not something my income can sustain - so I am raising funds for a years worth of Anat Baniel therapy which will be given in 12 monthly blocks.
Speaking to medical professionals, they agree Aalaeya's first step towards 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 thought untreatable until recently and definitely not through the NHS, although Aalaeya has access to top specialists in this country, they have said there is nothing 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 Aalaeyas sight between 10% and 100%, which are improvements that would make a huge difference to Aalaeya.
She would need tests to be done, which attach a fee, as well as travel and accommodation costs, as well as the treatment if she’s suitable, this works out to approximately £10,000. Techniques such as optogenetic vision restoration, which uses light technology and genes to generate a visual response, may give Aalaeya the opportunity to experience light, colors, and shapes.
The third treatment we are looking at is a Stem Cell Therapy treatment being run by the USA which again if Aalaeya is found suitable after assessment will seek to replace the cells which are affected by her disorder and reverse her eyesight issues completely. This would again attract a cost of about £30,000 with tests, accommodation and travel - which is way out of my reach.
Overall, I’m trying to access innovative technology and medical advancement to access help for Aalaeya that wouldn’t be available to her otherwise.
As a single parent my main worry for Aalaeya is her lack of independence if I’m not able or around to support her. Her sight and mobility are essential for Aalaeya to be able to take care of herself in the years to come.
These solutions 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; to grow my hair long to my shoulders’
You can help her do 2 out of 3 of those things :)
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.