Hi, I'm Val Constable and the mother of Karen Scott. We urgently need to raise this money within 12 weeks.
All parents will know how they would feel if they were told their child might predecease them so please help me to help my daughter.
As you can see...she is always smiling despite being in considerable pain. (Apart from behind closed doors as you can see from another photo!)
Please read Karen story below. #helpkarenscott
I have hEDS with the gene mutation associated with clEDS. Ehlers-Danlos is a genetic condition where the collagen in the body is faulty. Collagen is everywhere in the body including the major organs and for many years now it has caused issues with my joints, muscles, heart and digestive system and I am in constant pain. Up until 2016 I was able to remain working as a director of a firm for 3 days a week, but I was declining rapidly and had to concede defeat, which did not come easily. For many years prior, I had an M.E diagnosis and my EDS was undiagnosed. Since 2016, I’ve gone from using crutches to using a mobility scooter and now to a reclining wheelchair which was necessary due to attacks of blacking-out.
Unfortunately, due to the EDS the ligaments in my neck are now too weak to hold my head. It feels as if my neck is a paper straw and my head is a bowling ball and I’m two inches shorter than I once was due to spinal issues. I have Cranio-Cervical Instability and Atlanto Axial Instability and require an operation privately in Barcelona to rectify matters. This involves fusing the vertebrae from C0 to T1/T2 and whilst I will never be able to turn my head again, it will prevent further neurological damage and the body tremors I am now suffering. Without this surgery I may end up paralysed or worse. For every day that goes by, the risk increases. There is no neurosurgeon in the UK available to perform this operation on those with EDS.
I usually spend my time trying to help others from my bed. This includes acting as a trustee of Sussex Ehlers-Danlos Syndromes. It doesn’t come naturally for me to have to ask for help for myself. I also worry about whether anyone will want to help a 51-year-old lady rather than a younger person which I appreciate is more emotive, but I am not exactly old and I want to live and watch my grand-daughter grow up and to spend time with my children and my wonderful husband. They all need me. I desperately need your help in order to do so.
For details of the fusion visit: https://drgilete.com/
and click on the tab for CCI & EDS
For details on EDS visit: https://www.ehlers-danlos.org/