An Ely mum of two battling a degenerative disease that leaves her in debilitating pain and causes life threatening health complications is fundraising for an electric wheelchair so that she can regain some of her independence.
Brave Ria Hockey, 34, decided to share her heartbreaking story with Spotted in Ely in the hope that it would raise awareness about Ehlers Danlos Syndrome (EDS).
Ria also hopes that kindhearted people will help contribute towards a £5000 electric wheelchair, hoist and chairlift, so that she can get some of her mobility back without relying on others and be more able to look after her two boys, Kaiden, 10 and Kye, four.
“I would love to be able to fund it ourselves, but sadly we can’t afford to. Asking for help is hard. I would rather give someone money than ask for help for myself.”
Over the past year, Ria has suffered from sepsis four times, a life-threatening condition that arises when the body’s response to infection damages its own tissues and organs. During that time she has spent more weeks in Addenbrookes Hospital’s intensive care and high dependency units than she cares to remember.
She was first was first diagnosed with EDS in June 2014, after suffering from chronic muscular pain and frequent injuries.
By February the following year, her already deteriorating health had plummeted.
“I was admitted to hospital unable to eat or drink. I was clinically malnourished and my bowel had stopped working.”
Ria was diagnosed with gastroparesis, a chronic condition where the stomach can’t empty itself in the normal way, partly caused by a prolonged use of opiate painkillers.
By August 2015 Ria was diagnosed with intestinal failure.
“It was a massive blow but I knew I had to fight through it for my boys.”
Hours later Ria had a Hickman line inserted, with one end sitting above her heart and the other exiting her skin, meaning that she can no longer eat normally but has to receive her food intravenously.
“Being fed directly into my heart took a lot of getting used to. Not being able to eat was something I was sadly used to but the care needed to look after a central line is extensive. Little did I know that the next 18 months would hold more heartache and pain for me and my family.”
Ria feels constantly guilty about how her health has affected her family and about how much time she has spent hospitalised because of her condition.
“It’s hard, I’m not going to lie. I hate that I can’t be the mum I used to be before I got this poorly or the mum I want to be.
“I’m very hard on myself and push myself to give my boys the childhood they deserve. Unfortunately it isn’t always possible but my boys are the most amazing and resilient children I have ever known. They have had to cope with so much and have seen me go through more than any child should have to but they take it in their stride and never falter.”
In the evening, when Ria connects up to her feeding tube, known as total parenteral nutrition (TPN), she tends to crash. This results in her temperature spiking and violent shakes, known as rigour. Within minutes she can become unconscious.
Last November, her husband Peter had set up her TPN and as it was only 6pm, Ria decided to join her family downstairs.
“Within 15 minutes I started to feel the beginning of the rigour. It’s like my heart turns to ice and it gradually creeps out and through your body.”
She signalled to Peter to alert him to what was happening, hoping that it would pass without the children noticing.
“Peter, knowing me so well, immediately went to grab my thermometer to check my temp. It was 37.7 degress! My crash point!
“The last thing I remember is the look on my boys’ faces as the shaking turned violent and I went unconscious.”
She came round the following day to find herself in intensive care.
“I was in and out so Pete made the decision not to allow them in to see me. After a couple of days I went to my normal ward, M4. It’s like my second home.
“Despite everything they had seen and the fact that they hadn’t been allowed to see me for days, they were fine.
“Kaiden understands how bad my health is but Kye just gets on with it. I’m extremely lucky to have my mum, Wendy, and mother-in-law, Wilma, close by. Wilma moves in to help Peter out with the boys while I’m in hospital and my mum moves in when I get discharged.”
Although her EDS wasn’t diagnosed until she was in her 30s, Ria remembers being different from other kids when it came to her mobility and “sitting in really strange positions because they were the most comfortable. In those days, I was called ‘double jointed’.
“I would do my party tricks like popping my thumb or bending my fingers the wrong way.”
At that point, she didn’t suffer from any pain. But at the age of 10, Ria racked up her first significant injury after damaging her knees during PE.
She ended up on crutches for six weeks, with fluid building up under her knee cap.
“To this day, I still have problems with my knee! The main issue with hypermobile joints is that once the ligaments stretch, they don’t ping back. Think of a rubber band, you stretch it and it pings back into shape. In EDS, the collagen is faulty and it is more like a balloon. Once blown up, it’s never the same.”
Another clue to her condition was her issues around eating.
“I was never able to eat unless I was hungry, and that wasn’t very often. I struggled swallowing certain foods like potatoes or meat. I always seemed to have pain in my stomach and bowel. I remember thinking that the pain couldn’t be normal and wondered why other girls didn’t talk about these pains.”
By the age of 15, everything came to a head, with Ria suffering from frequent injuries, particularly to her knees, wrists and hips.
“I was receiving physio at Ely and my physiotherapist looked at my hands and said that along with my facial features and my general bendiness, I had strong EDS characteristics.
“Sadly, she wasn’t able to take it any further as so little was known about EDS then.”
Ria spent the last two years of school on crutches and painkillers. Things took a turn for the worse once she hit 18.
“I was dislocating and struggling with pain but I was in the gym five days a week. I was determined not to let my pain stop my life and that was when I met my future husband Peter.”
Without the support of Peter, her mum and mother-in-law, Ria would not be able to function now, she says.
Although EDS can be hereditary, no one else in her family is displaying the symptoms, although some of the males have chronic joint problems.
“Kaiden has joint hypermobilty but he uses it to his advantage and is a goalkeeper with Ely City Crusaders Under 11s and Cambridge United Goalkeeper Regional Development Squad.
“We monitor him constantly and he knows not to push himself. People with hypermobility tire really easily because the muscles have to work so much harder to control the joints.”
Ria currently has to manage with a self propelled wheelchair but as her shoulders dislocate and she is zapped of energy, she cannot manoeuvre it herself anymore.
“It’s hard being 34 and needing to be in a wheelchair, let alone having to rely on someone to be around to push you in it.
“Having the electric wheelchair will mean that when I come home from hospital, I’ll be able to get around my home easier, I’ll be able to go out with my family and not have to worry about who is going to push me and them hurting their backs, I’ll be able to take my puppy Luma out for walks with Peter and the boys. We’re training him to be a support dog.”
As well as allowing Ria to move around independently, an electric wheelchair would enable Ria to reach objects she can’t currently access, join in conversations at “normal height”, tilt and recline to take pressure off her stomach and bowel and allow her to lie down when her blood pressure drops.
“I’ll basically have the freedom to move around without having to rely on my family and friends. Basically everything I can’t do in my current chair.”
Just 24 hours after launching her Just Giving page, Ria raised a phenomenal £825.
A number of individuals and organisations are also fundraising on her behalf, including Ely Tesco Pharmacy, the Drayman’s Son micro pub, Tilly Tractor/The Prospects Trust at Snakehall Farm, her wedding photographer Shaun Scott and friend Lisa Long.
As well as being blown away by people’s generosity towards her fundraising campaign, Ria has paid an emotional tribute to the healthcare heroes who have looked after her throughout her journey.
“I am eternally grateful to the team of consultants, doctors, nurses, ward staff who look after me at Addenbrookes.
“They have saved my life more times than I want to think about and do it without question. They’re there for me whenever I need them and I honestly wouldn’t be here without them.”
Ria has so far reached £1425 of her £5000 target.
You can sponsor her here.
Click here for more information about Ehlers Danlos Syndrome.