Fife dad’s Father Day tribute to his daughter Eilish

But the Browns will also visit the cemetery, something they often do on milestone dates.

For there is one member of the family who will be missing – Eilish, who died on September 9, 2014, aged just nine months old.

Colin has written a very personal Father’s Day love letter to his wee girl, in a bid to raise awareness of the work done by Children’s Hospices Across Scotland.

CHAS was a tower of strength and support to the family following Eilish’s diagnosis with Krabbe Disease in April 2014, a genetic condition which affects the production of myelin in the brain.

Colin said: “At the time, the consultant at Victoria Hospital in Kirkcaldy told us there was no cure and we were referred to Rachel House in Kinross.

“We’d spent three weeks in hospital prior to that, relying on our parents looking after our two boys.

“Rachel House gave us a chance to spend more time together as a family.

“Kirsten and I could spend time with the boys and know that Eilish was being looked after and vice versa.

“The staff helped to show us how to use the feeding tube and we also used the CHAS at Home service so we could spend time with the boys, while Eilish was being looked after at home.”

The family also received support and counselling following Eilish’s death.

So while Colin was apprehensive about sharing his very personal Father’s Day letter, he decided to do so as a thank you to CHAS.

And it would take a cold heart not to be moved by it.

It reads: “My darling Eilish. I wanted to write to you as I spend another Father’s Day without you beside me.

“The one we had together, with you in hospital in 2014, will always be very special to me.

“Your brothers and little sister – (Innes (8), Keir (6) and two-year-old Lara) – will look after me this year but we all wish you were here to write your name on my card and spend the day with us.

“You should be finishing your first year in school, having made new friends, and be looking forward to your summer holidays with days out and fun times playing in the garden.

“Mummy and I take comfort knowing you are now in Heaven and free of the pain and suffering which Krabbe Disease caused you.

“We are working on ways, in your memory, of helping to find a therapy or cure. We love you sweet Eilish and miss you every day.

“All my love, Daddy.”

Colin is featured reading the letter in a video released as part of CHAS’s Father’s Day campaign, in solidarity with bereaved fathers and those currently facing the stark reality that their child has a life-shortening illness.

It features three dads from across Scotland, each sharing their own personal letter to their child.

Colin said: “It’s what I’d like to say to Eilish if she was here this Father’s Day.

“It’s a way to help other people realise what a vital service CHAS provides.

“There are thousands of dads who have shared the same experience.

“If something I say in my letter resonates with another dad and gives them some comfort, it would be a fitting tribute to Eilish.”

Unbeknown to them, Colin and Kirsten both had an abnormal gene which meant their children had a one in four chance of having Krabbe Disease.

So they have dedicated time to raising awareness and funds for research.

After Lara’s birth, Colin became a trustee of the UK Krabbe Disease charity.

And he was delighted to report a major milestone at the annual family gathering last month.

He said: “Passage Bio, an American company, is looking to start gene therapy clinical trials for Krabbe Disease later next year and came to the conference to discuss it with families.

“It’s given many families fresh hope; sadly, that’s something we didn’t have when Eilish was diagnosed.”

Colin, a former Kirkland High School pupil who works as a solicitor in the Edinburgh office of Burness Paull, was also delighted when the firm made CHAS its 2018 charity of the year.

He added: “Along with 15 colleagues, I abseiled off the Forth Rail Bridge. Thanks to that, and other events, we raised more than £11,000,

“This was matched by the Burness Paull Foundation so I was delighted to present CHAS with a cheque for more than £22,000.

“It was a way of thanking the staff at Rachel House for all their support.”

Help CHAS be there for dads...

The CHAS Father’s Day appeal is simple: your donation will help CHAS be there for all the dads in need this Father’s Day.

Make a donation to CHAS and you can help fathers cope with the devastating death of a child.

£15 could help a dad and their child create magical memories.

£25 could help give a dad vital bereavement support.

£50 could help organise a support group where dads can share their experiences.

Donate online today at www.chas.org.uk/donate.

Nicky Bridges, clinical nurse manager at Robin House, has worked in children’s palliative care for the past 19 years.

She has recently completed a study on the impact a life-shortening condition for their child has on dads.

Nicky said: “Fathers have spoken of the loss of hope at the time their child was diagnosed and the challenges of a new world of clinical services.

“They experience sleep deprivation, which can affect their relationships with their partners and other children.

“Fathers spoke of a lack of support for them. Many of them also feel socially isolated from their peer group.

“Maintaining full time employment is a challenge which can subsequently affect a family’s finances. One dad had worked all his life but had to give up his job to assist in the care of his child. He cried as he explained how difficult that was.

“There is also a general perception that health services are more focused on mothers.

“The fathers wanted to tell their story and are keen to share their experiences, as they want to help others in a similar situation. “Carrying out this study gave me a huge insight into what daily life is like for fathers. I am now working with one of my colleagues in family support to look at how CHAS can ensure that we are reaching the fathers who use our service.”