Ulverston dad Phil Clark with Elhers Danlos Syndrome fundraises for life-changing surgery

Those are the words from a bed-bound dad-of-three who is living in ‘torture’ after suffering a life-changing fall.

Phil Clark along with his three children, Owain, Steffan and Rhiannon, all have Elhers Danlos Syndrome – a genetic disorder that weakens the collagen in the body.

The condition is thought to affect just one in every 5,000 people.

The disorder caused Mr Clark’s spine to become unstable and his brain to descend into his neck, leaving him in unbearable pain.

After being diagnosed, the family, who live near Ulverston, was told Mr Clark needed surgery that could not be performed in the UK due to him having EDS, and the family tracked down a neurosurgeon in Spain to take on the operation.

After a rallying call to the community, the family managed to raise a mammoth £42,000 and Mr Clark was able to undergo the life-changing surgery in 2018.

READ MORE: Ulverston dad with rare condition that leaves him at risk of internal decapitation says 'big thank you' for life changing donation

The surgery saw Mr Clark fused from his head to his shoulder level and doctors took out a piece of skull to make room for Mr Clark’s squished brain and released a tethered spinal cord.

After a successful surgery, Mr Clark was finally able to get his life back.

Phil Clark in 2018

However, in January 2021, while out walking with his family, he suffered a fall and immediately knew he had damaged something in his neck and middle of his back.

After a six-week stint at Furness General Hospital, Mr Clark decided to recover at home and was hopeful the symptoms would subside.

16 months later, Mr Clark is still unable to walk and is in excruciating pain with reduced control over both legs and his right hand.

The family said the neurosurgeon in the UK knows what is wrong but is unable to help due to rules around what surgery can be performed within the NHS on people with EDS.

Currently, there are no private doctors here willing to do the surgery, said Mr Clark.

He said: “I came home and we were in a state of shock – we didn’t know what to do.

“We weren’t getting anywhere with the NHS. My original surgeon’s secretary in Spain contacted me and said they were finding new tests and thought they might be able to help.

“I sent my scans to Barcelona and he was quite concerned at what he saw. He wanted more specialist scans so we felt the only way to get the tests done was to do them in Barcelona.

“We went over there a few weeks ago and I was told my spinal cord had re-tethered in a number of places which he thinks is causing the lower body issues.”

This means every time Mr Clark moves, his spinal cord gets stretched and tugged, causing a significant amount of pain.

This was complicated by him dislocating his T2 and a number of other vertebrae further down his spine for the first time, which are slipping in and out of place due to his condition.

Each time they do this they put pressure on his already stretched cord, which is why Mr Clark is in so much pain and losing the function in his limbs.

Phil Clark and his family two weeks after surgery in 2018.JPG

Mr Clark is hoping to undergo surgery in Spain again to release the tethered cord and ideally get rid of any painful symptoms, or reduce them to a level that is tolerable to where he can lead a fairly normal life.

“I want my quality of life back,” said Mr Clark.

“I spent practically all of the last year and a half lying on my side in bed. The pain in my back is too much that I can’t sit up or stand for any great length of time because any movement is pulling on spinal cord.

“I can’t really walk without aids. I use walking poles in the house before the pain is too much which has a knock-on effect and causes the symptoms to escalate.

“We’re Christians, we believe God has a plan for us, and I don’t know what that plan is and sometimes it is hard to go through it.

“I feel like I’m missing out on stuff with the kids and am not being as involved in their lives as I could be.

“I used to go to the park with my son and play football and can’t do that anymore. I can’t watch my daughter’s show at The Forum this weekend. It’s little things like that.”

Mr Clark’s wife Sallyann said her husband’s health issues have been ‘incredibly tough’ on the whole family.

She said: “It’s so tough on the rest of us.

“This is my person that I go through life with and Phil can’t physically be there, I feel alone in it.

“To get Phil back for me and the kids would be indescribable.

“We have discovered the lack of knowledge around EDS and that really hit home for us this past year. There is no help.”

Mr Clark has been offered to undergo the surgery in Barcelona on July 1.

The family need around £50,000 to cover the cost of the operation as well as aftercare.

To help fund the costs, they have launched a fundraising page – and are appealing to the public to give what they can to help Mr Clark get his life back.

“It was incredible last time around,” Mrs Clark said.

“People are amazing and that’s one of the main things we’ve learnt coming out of this.

“It made it really clear to us how amazing people are and how reaching out, asking for help can make such a difference in your life.”

“This would mean giving me my life back again,” added Mr Clark.

“That’s what it would do, I’ve spent nearly a year and a half in bed, it’s like torture. I want to live a normal life again.”

If you would like to make a donation, click here.