Dad of Scottish boy with terminal illness forced to sell family home amid call for help

Edinburgh Live

9 hours ago

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The parents of a Scottish boy with a rare condition have sold their home while shelling out thousands of pounds on his treatment.
Six-year-old Jamie Tierney suffers from rare muscle wasting disease Duchenne muscular dystrophy (DMD). His dad, also Jamie, has called on more support to help families with terminally ill children.
The 33-year-old said making his family homeless was the best options amid the difficult circumstances they find themselves in. The family can put money from the sale towards treatment for Jamie.
However, dad Jamie believes there should be a body set up to support families navigate the difficulties a terminal diagnosis brings - from accessing benefits, to help with housing.
Jamie, 33, from Dunfermline, says the family home became unsuitable for his son as they are now staying with different family members while they wait to hear if they will be given a council house, reports the Record.
They receive support from the Muscular Dystrophy UK charity, and the NHS, as well as carers' allowance, but have to deal with each organisation individually, and Jamie believes a streamlined service would make it easier for families.
Jamie's call for change comes after the family were denied the chance for Jamie junior to get a wonder medication which is provided free to the NHS.
The family has headed abroad on a number of occasions for Jamie to receive treatment. Givinostat, a groundbreaking new life-extending treatment which slows the progress of the condition, has been cleared for use in the UK and is being used in England.
But Scottish health boards have not given the drug to any patients through an early access programme, despite patients south of the border benefitting from it.
Jamie said: "We sold our family home for many reasons - it was a townhouse with too many stairs, completely unsuitable for Jamie. We needed to find a way to give him independence.
"Jamie's needs are increasing year by year. Our street is on a hill, and watching the kids play there breaks my heart - knowing Jamie can't join in this summer.
"We need to keep money for future treatments and medical needs for Jamie. I think there should be supportive pathways for families who are in this situation and to aid them with options and help as currently we are jumping through hoops.
"We were told we were the last family accepted on a clinical trial in the U.S. We were petrified but ready to move for Jamie. It fell through - we were devastated."
Jamie's complex condition gradually weakens all the muscles in the body and affects one in 5,000 boys. It also has a life expectancy of around mid-20s.
The family have travelled to both the US and Mexico in the search for potential treatment options as they have fundraised tirelessly through raffles and help from family and friends.
Jamie added: "As of this Friday, we're technically homeless. We can't buy again. My wife had to give up work to care for Jamie, and I'm in the early stages of building a new business that just about keeps us afloat.
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"Housing are trying to help, but we're told we just meet the criteria of 'homeless'. Yes, we could rent privately but a suitable ground-floor property would cost double our old mortgage.
"The system isn't built for families in extreme, complex situations and when you don't fit the system the system forgets you. How are families supposed to survive like this? I think there's certainly got to be some sort of help.
"If we weren't in this situation my wife and I would both be working. She is no longer working and the stress and worry on your child's health affects your work. I'm in a first year start up struggling to support us.
"If we had to go private rent it would financially cripple us. We are self funding Jamie's treatments with fundraising but fundraising has become harder and harder for us. We just feel sorry for other families in this situation.
"There's families that are being affected every day. I wouldn't wish this on anyone. We would live on the streets for Jamie to be healthy, but the system doesn't seem to consider us."
You can donate to their GoFundMe page here.
The Scottish Government said: "We have every sympathy with the Tierney family and the hardships they're facing. We want disabled people and carers to get the support they are entitled to, making sure the application process is as straightforward as it can be.
"Child Disability Payment is designed to mitigate some of the additional costs of caring for a disabled child or young person and we have a fast-track application route for people who have a terminal condition.
"We have also transformed financial support for unpaid carers in Scotland, in recognition of the impact caring can have on a family's finances.
"Local authorities will be provided with £15 billion this financial year for a range of services, including housing options services - an advice process councils use when someone approaches them with a housing problem."