Stephen Clarke: Cystic Fibrosis never stopped inspirational Co Down man living life to the full
STEPHEN Clarke said to his wife Fiona shortly before he died, "I don't have a bucket list, all I want is for you to write a fun list".
The 38-year-old had known since the age of five, when he was first diagnosed with cystic fibrosis, that his life would be severely limited. But he never complained, never asked for special treatment and he never let it stop him living life to the full.
As a child Stephen had loved all sports and was a keen supporter of Man United. He later played tag rugby and set up one of the first teams in the north, the Ulster Wizards. The IRFU have now created a Spirit of Tag award for sportsmanship in his memory.
He also went circuit training each week and embraced the parkrun phenomenon and the community around it.
When Stephen was no longer able to run himself, Fiona ran for him and he remained involved by volunteering, when not looking after their two children, Lucy (seven) and Simon (three).
Always a snappy dresser, he had a good job with Ulster Bank and was a brilliant husband and dad, doing everything to ensure the family enjoyed a normal home life.
Stephen continued to be very active despite having only 30 per cent lung function over the last year, but was hospitalised for several weeks after Christmas with a chest infection.
He later suffered a collapsed lung and was admitted for the last time at the end of March, passing away in the Marie Curie Hospice on May 1.
Right up until the end he was joking and smiling with staff and visitors and Fiona said his life is proof that illness or adversity doesn't have to stop you achieving what you want.
"He was the most amazing, kind, gentle and lovable guy anyone has ever met and inspired so many people," she said.
Stephen was the eldest of four children, three of whom were diagnosed with cystic fibrosis (CF). His brother Richard died with the genetic condition aged 16.
He grew up in Bangor and was a bright and popular pupil at Our Lady and St Patrick's College, Knock, before studying finance and economics at Queen's University.
He remained close to school friends, enjoying rugby trips together, and in November they organised a special stag party for Stephen - he had been unable to have one before his wedding as he was in hospital.
He lived in Dublin for a while as part of a graduate scheme with AIB and worked for the Ulster Bank in Newry and Belfast over the last 14 years.
Living with the CF meant a strict daily regime of medication and up to four hour-long sessions of physio to deal with build-ups of sticky mucus in the lungs.
However, Stephen was able to incorporate these into his working day and went much further by taking up high-intensity classes at Ian Young Fitness in Carryduff.
Ian said he was a "massive inspiration" to himself and others, while a friend would joke when she was flagging that she needed to "harness my inner Stephen".
His class recently held a circuits fundraiser for cystic fibrosis charities, while Fiona herself has raised around £6,000 through marathon running.
Stephen never resented the fact that he was not suitable for a transplant or was unable to access new drugs, he just tried to keep his condition in the background as much as possible.
He met Fiona, a south Belfast GP, while she was in her final year of training and they made their home on the Saintfield Road, celebrating 10 years of marriage in hospital just a couple of weeks before his death.
Fertility issues linked to CF had made having children unlikely but IVF helped bring a beautiful daughter and then a son into the world, a source of enormous joy.
The family called themselves Team Smiley Eyes and spoke openly about the subject of death.
Fiona and the children now tell each other "We are as strong as a rhino", a reference to a painting of a rhino bought on Valentine's Day this year.
Stephen's Requiem Mass at the Church of the Immaculate Heart in Carryduff was a celebration of that positivity. He had requested that everyone would wear bright colours and have a party to celebrate his life - they did that with two bands playing at the Crowne Plaza that night.
When he was buried, they also played the song Hero by Family of the Year, which includes the lines "Let me go, I don't wanna be a hero any more".
"Stephen was a really affable, likeable, gentle and placid person and he lived for me and the kids," Fiona said.
"He was the best daddy. He did more for those kids in the seven years than some daddies do in a lifetime.
"He was always so positive, wanting to live as normal a life a possible. He was everyone's hero."
* For further information or support about cystic fibrosis see www.cysticfibrosis.org.uk