It’s the house that Julian built – a home away from home for cystic fibrosis patients in Ireland.
Former Dancing With The Stars’ judge Julian Benson wanted to give something back to fellow sufferers.
So he bought an old property in Dublin’s Rathgar which, when renovated, will provide a place to stay for those with the chronic disease who need hospital treatment.
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It will also offer accommodation to family members if a loved one is in hospital long-term.
Now the Irish public is coming together to donate the half a million euro needed to get it in shape. Donations have already hit €100,000.
Ireland’s favourite architect Dermot Bannon is on board on what he calls a “dream project”. The work will be shown on a special episode of Dermot’s RTE show Room To Improve.
Choreographer and dancer Julian was diagnosed with CF at the age of two and given a life expectancy of 13 years.
Now 52, he has seen first-hand the distress patients and families go through trying to find somewhere to stay during long hospital admissions, which can last for months.
Julian says this project, similar to Crumlin Children’s Hospital accommodation service Ronald McDonald House, is his labour of love.
He revealed: “This is really close to my heart. I’m very passionate about it. I made a promise years ago to my mother and the CF community to give something back.
“When I saw first hand people in hospital sleeping on chairs, sleeping on floors, families crying because they couldn’t afford to stay in Dublin, I said ‘this has to change’.”
People with advanced CF may have to attend hospital appointments several times a week. Often they are without family because of the distance to travel.
Lar Brennan, diagnosed with CF when he was nine months old, is one such patient who is cheering the project on.
He received a double lung transplant nine years ago at the age of 29 and now has monthly appointments with the transplant team.
He also has regular appointments with kidney, liver and diabetes specialists, among others.
Each visit requires a four-hour round-trip from his home in Wexford. Even more difficult are the periods Lar has to spend in hospital, away from home and his wife Inese, 14-year-old stepson Marcus and two-and-a-half-year-old son Little Lar.
Since he was born, the hospital stays have become more difficult.
He said: “It’s hard to leave him. They grow up so fast at that age. I’m afraid I’m going to miss out on everything.”
Because Lar is prone to life-threatening lung infections, he spends much of his time in isolation and has to be careful around other people.
As a result, there are strict restrictions on visitors to the CF ward.
To spend a few hours with his family, he has to leave the hospital. He told the Irish Mirror: “If we had somewhere to go where there is a homely environment and you could spend that quality time with your family, that would be really helpful.”
Lar spent four years in St Vincent’s Hospital in Dublin waiting for a lung transplant. During that period he spent less than five months at home.
He said: “I was on my own. It was tough going. When you’re that sick it’s a very lonely and vulnerable time.”
Just one of the times when this new building would have been hugely valuable was the first night Lar was called for transplant.
He told us: “I went from St Vincent’s to the Mater Hospital in an ambulance and Mam and Dad met me there. During the night, the doctors made the decision that one of the donor lungs was damaged. They couldn’t just give me one lung, it had to be two.
“So I was brought back to Vincent’s and my parents had nowhere to stay. You can’t ring hotels at 2am.
“If the house had been there then, I wouldn’t have had to worry about them driving back home in the middle of the night.”
The house, yet to be given a name, is just 15 minutes from the CF centre at St Vincent’s. There is also a direct bus route to the Mater Hospital for people awaiting transplant.
The pre-1963 building is in need of total renovation, which is why Julian has brought architect Dermot on board. Julian has received more than 180 emails from people offering help – including from a lady who said she would make tea and sandwiches for the builders putting in the kitchen and floors, another who is hand-crocheting bedspreads and a third who has offered to buy sheets for the beds.
He said: “The Irish people are the best and kindest in the world. Without them I wouldn’t be where I am with the project. We have the house. We’re reaching out to people now to say we’re nearly there, if you could just help us over that last little bit.”
Dermot added: “When he first approached me to do it, it was a no-brainer. Families need to travel. They might have a sibling in hospital and other siblings at home.
“This will allow families to stay together and take the stress away.”
- Anyone interested in volunteering is asked to send an email to info@jbcff.com or call 01 676 4377.
- There is a facility to donate money to the project on the Julian Benson Cystic Fibrosis Foundation website ww.jbcff.com/.
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