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‘I want to go home’- Heidi’s heartfelt plea for specialist wheelchair

    By Andrea Kirk  

LEVEN resident Heidi Cox is appealing for help to fund a specialist wheelchair that would allow her to return home from hospital in London. The high-tech chair suited to her, costs almost £16,500, but she claims it is not funded through the NHS.

She suffers from a condition called Postural Tachycardia Syndrome (PoTS) an abnormal increase in the heart rate which occurs after sitting up or standing and causes dizziness and fainting.

Heidi, who has had to spend the last three months hospitalised in London, also has a condition called Hypermobility Ehlers Danlos Syndromes (EDS), which is associated with PoTS.

EDS is a group of 13 individual genetic conditions, all of which affect the body’s connective tissue. A gene mutation causes connective tissue to be fragile and stretchy and PoTS is one of the complications Heidi suffers as a result of her EDS and is an abnormality of the functioning of the autonomic (involuntary) nervous system.

She is currently in University College London Hospitals (UCLH) where there is a specialist autonomic unit, after being admitted to St Mary’s hospital in London in early June following a severe anaphylactic reaction.

The allergic reaction has caused frequent fainting which is preventing Heidi from returning to Leven.

Now she has been given a glimmer of hope after being shown a wheelchair that will allow her to return home and back to her normal life but at a cost of £16,452.18.

The Sedeo Ergo chair is the only one that can raise Heidi’s legs and lower her head so it is below her heart to allow her to recover from a faint with the touch of a button.

However, Heidi says she has been told the wheelchair she needs does not fall under NHS provision. The Gazette approached NRS Healthcare Hull and East Riding Wheelchair Service, which is commissioned by the NHS East Riding of Yorkshire Clinical Commissioning Group for comment, but no one was available at the time of going to press.

“I would have been home four weeks ago if I had had the chair. I am effectively blocking a bed and the false economy is massive,” said Heidi. Her EDS has been progressive with flare-ups cumulating in her health declining and retirement from her job last July due to her ill-health.

“I hate being so far away from home, I miss my partner terribly, our two cats and my ‘normal life’. My partner still has to work full time and I have seen him three times during my stay. FaceTime is great but not being with him is really hard and a real test of our relationship. Fortunately, my sister is able to visit me as she lives an hour away from London. She shares the genetic condition making visiting challenging and tiring.”

Heidi has set up a Just Giving page to help her raise funds for the wheelchair which will allow her to work with a personal assistant to live independently. “I’d like to thank the generous people who have donated to my Just Giving fund so far.

I have been overwhelmed and humbled by the donations small and large,” she said.

*Heidi’s Just Giving page can be found at: https:// www.justgiving.com/ crowdfunding/heidi-cox

The Holderness Gazette - Serving News to the Holderness Region