A father and his three children are all battling an incurable genetic condition that makes the body fall apart from the inside.
Phil Clark’s wife Sallyann must cope with the burden of knowing that he and their youngsters could be taken from her.
All four have a form of Ehlers-Danlos syndrome (EDS) which weakens the connective tissue that supports organs and body parts, holding them in place.
A father and his three children are all battling an incurable genetic condition that makes the body fall apart from the inside. Phil Clark’s wife Sallyann must cope with the burden of knowing that he and their youngsters could be taken from her (pictured together)
Pictured: Phil Clark carry son Steffan – who also suffers with the condition – whilst on a walk in the Black Mountains, south Wales, in 2014.
Mr Clark’s condition is so advanced that the progressively weakened ligaments in his neck could snap with fatal consequences in a process that has been described as internal decapitation.
The family must raise £55,000 to pay for him to have urgent and complex surgery in Spain next month that is not available on the NHS and may also be required in future by the children Owain, 13, Rhiannon, ten, and Steffan, five.
‘We have been dealt the cruellest of blows,’ said former teacher Mrs Clark, 38, of Birkrigg Common, near Ulverston, Cumbria.
‘Knowing Phil and our precious children are battling against such a terrible fate is horrendous. My husband could suddenly die and won’t be here to watch his children grow up and help them cope with the same dreadful condition.’
Mr Clark’s condition is so advanced that the progressively weakened ligaments in his neck could snap with fatal consequences. Pictured: Phil Clark with wife Sallyann, son Owain (centre) and newborn baby daughter Rhiannon
Pictured: MRI scans of Phil Clark’s neck and spine. The family must raise £55,000 to pay for him to have urgent and complex surgery in Spain next month that is not available on the NHS
Pictured: Phil Clark,24, horse riding while on holiday in Canada in 2003. The lifesaving surgery will fuse 39-year-old Mr Clark’s upper vertebrae together to stabilise and strengthen his neck
The lifesaving surgery will fuse 39-year-old Mr Clark’s upper vertebrae together to stabilise and strengthen his neck, as well as remove part of his skull to make way for his brain that is seeping into his neck.
Mr Clark was once superfit but now wears a neck brace and relies on a mobility scooter to get around. He said: ‘I have gone from running up mountains and windsurfing to being left with the most horrendous muscle pain, severe fatigue and fighting for my life.’
The family need another £23,000 to cover the cost of the operation.
‘I don’t like asking for money but it’s our final chance for me to be here for my children, who are going to need so much support as they get older,’ said Mr Clark, who is employed by Amazon but has been unable to work for three years.
His condition was diagnosed after Rhiannon began suffering from mobility problems.
Mrs Clark said: ‘By the time she reached six Rhiannon could only walk for a few minutes at a time and suffered from severe joint pain.’ Symptoms appeared in her siblings as well.
Pictured: Phil Clark with wife Sallyann, daughter Rhiannon and son Owain at a family wedding in New York state,USA, in 2011. Experts say the surgery Mr Clark will have is not available on the NHS because there is not enough evidence to monitor its long-term success rate
Father Phil Clark who suffers from Elhers Danlos Hypermobility with daughter Rhiannon,10, sons Owain,13 and Steffan,5, and wife Sallyann pictured at their home near Ulverston, Cumbria
Mrs Clark said: ‘Owain had started complaining of agonising pain in his knees and severe headaches, and later on Steffan began waking in the night screaming in agony.’ All three are now home-schooled.
Their parents were told 50 per cent of children in a family would be expected to inherit the condition. ‘We have just been incredibly unlucky that all three of our kids have it,’ Mrs Clark said.
Her husband’s cranio-cervical instability, in which his brain is sinking and his neck weakening, is a rare extreme side effect of EDS. Without surgery paralysis, organ failure and ‘internal decapitation’ are likely.
EDS affects around one in 5,000 people to different degrees of severity. Experts say the surgery Mr Clark will have is not available on the NHS because there is not enough evidence to monitor its long-term success rate.
To donate go to: https://www.justgiving.com/crowdfunding/phil-clark