Ehlers-Danlos syndrome sufferer Debbie Rocke, from Broadstairs, hopes to raise money for surgery abroad
00:01, 15 February 2017
A mother-of-three is hoping for help to beat a rare condition that has left her unable to complete everyday tasks.
Debbie Rocke, 35, faces a daily struggle as a sufferer of Ehlers-Danlos syndrome (EDS).
She was forced to give up work and is now bed-bound for most of the day.
Debbie has set up an online page to crowdfund the £60,000 she needs for life-changing surgery in Spain as the condition cannot be treated in the UK.
A carer has been called in to help with the household chores as well as getting her youngest son Samuel, four, to school.
Her other two children, 12-year-old Tom and Chloe, 16, do what they can to support their mother.
The Broadstairs resident said: “We’ve seen a number of neurosurgeons around the country.
“We found out it is such a rare condition that they can’t treat it here. We looked for other people who would take me on as a patient and there was one in America and one in Spain.
“I chose the Spanish surgeon because he was less money.”
Debbie now needs urgent surgery as a symptom of EDS is spine curvature.
It means the tip of her spine is now pressing into the base of her brain which is causing ringing in her ears, balance issues and problems with memory.
"The hope that I’m going to get better is what gets me through each day" - Debbie Rocke
She has been raising money for the surgery in Teknon hospital, Barcelona, since October and has managed to get more than £9,000 so far.
Debbie added: “I know I’m never going to be running around again, I’m never going to be the same again.
“But if I can just be a mother to my children, be able to take them to school and play with them and do things for them, that would be the dream. The hope that I’m going to get better is what gets me through each day.
“Not every day is like this though, I do have times when I think it’s not worth going on.”
Ehlers-Danlos syndrome (EDS) is a condition which affects people in different ways.
In Debbie’s case it means her joints dislocate on an almost daily basis, her skin has problems healing and it can often be bruised.
She is suffering from severe and painful symptoms due to the pressure on her brain from the tip of her spine.
In other people the condition can cause weaker muscles, due to ligaments not being able to connect properly.
To find out more about donating visit the fundraising page here.
A typical day for Debbie:
7.30am - Carer arrives to wake youngest child Samuel up, have breakfast and do the school run and help Debbie shower.
8am - Debbie gets back in to bed where she stays until the carer comes back with the children after school at 3pm.
3pm - The children come home from school, this is when Debbie spends time with them as dinner is cooked.
5.30pm - The carer leaves for the day so Debbie goes back to bed until her husband gets home from work.
Throughout the day Debbie has to take 50 tablets so that she can be in the best possible condition.
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