Weʼve raised £0 to Help to complete essential home renovations to support a better lifestyle for my daughter with rare genetical condition Myasthenia Gravis
- DY4 United Kingdom
- Closed on Saturday, 23rd March 2019
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My 9 year old daughter was diagnosed at 2 years old with a very rare strain of Myasthenia Gravis, a life limited genetic disorder. Due to deterioration of her condition and to prevent taking our daughter Chloe into respite care, we took the decision to redevelop our home with adaptations to give Chloe the most comfortable and practical environment to allow her to have as normal a lifestyle as possible, and to allow us, as parents, to enjoy our daughter whilst providing her with a calm and comfortable environment, and most importantly, allowing us to meet her care needs at home.
Unfortunately, although paying £30k+ to building contractors in June 2018, the work has been left unfinished due to additional costs of approximately £10k which have been added as the work has developed, a cost which we unfortunately cannot finance at such short notice,
Chloe is scheduled have a hip operation in January/February 2019. As a family we are preparing to support her recovery and to finish the works on the adaptations would not only support Chloe's recovery, but take an immense level of strain off us as a family to allow us to give Chloe the dedicated care and attention she not only needs but deserves.
Thank you in advance for taking the time to view our page, any support will be received with appreciation beyond words,
Thank you and love and support to all affected by this genetic condition, lets hope research will prevent the suffering of patients in the future.
Dale and Donna
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