THE memory of little Ellen Haugh’s life will be honoured at the Belfast Marathon this year, as her parents seek to celebrate the little girl who lit up their lives for seven months in 2022.
A fundraising campaign has raised over £10,000 that will go towards supporting the Gauchers Association and also the Royal’s Helping Hand charity, as the community of Kilkeel and beyond have given their support wholeheartedly.
The Gauchers Association supports families of those who have children with the condition while Helping Hands is a charity that provides the best equipment, funds research, education and supports the immediate needs of children and their parents at the Royal Belfast Hospital for Sick Children.
The Haugh family have organised a series of fundraising events, with the big one being their sponsored run at the Belfast Marathon on Sunday April 30, when Ellen’s father, Andrew, will carry a 10kg weight – which is the weight Ellen would have been – as a symbol to say that his daughter is still with him.
He will run with Ellen’s uncle Damian and they will be cheered on by Orla, Ellen’s mum.
She explained that the fundraising campaign is a chance for them to celebrate Ellen’s life.
Orla said: “We want people to know about Ellen and that her life meant something.
“Ellen was our first wee one. She changed everything in our life. We are grateful that she chose us to be her mummy and daddy.
“Our thing is now to be her voice and put goodness out there. We are trying to leave the world a better place.”
Fundraising efforts have included a charity quiz last Friday, which raised £5,600.
The quiz was organised by Kilkeel Chamber of Commerce and 35 local businesses donated prizes.
People have also been donating in Haugh’s Dental Care – the family business – in Kilkeel as well as on a Just Giving page online.
Orla is from Belfast, so regards herself as a ‘blow in’, so she was delighted and humbled that the local community would reach out to her.
“Our local community, Kilkeel and surrounding areas, have been absolutely amazing. People are so kind and generous,” she said.
“They have been such a help. I’ve had conversations with members of the community who I don’t really know that well. They reached out to me.”
Perhaps one of the reasons why the community has supported the campaign is because they saw Ellen first hand.
Orla said: “I used to bring her into work, and she would sit with Joanne as everyone was checking in. I was only working one day every fortnight. All the girls said bring her in and they would mind her while they were working. She had loads of aunties.”
The practice now has pink scrubs for their staff to wear, and Andrew’s chair was coloured pink, all in memory of his daughter.
The family are keen to make sure that people remember Ellen fondly.
Orla said: “She wasn’t here long, but she was here big time. She had a huge impact.
“Ellen was absolutely gorgeous. Big eye lashes. Really nosey. From she was two months old, everyone said that she was really good at keeping her neck up straight so she could look at everyone and see everything that was going on.
“She had been to Venice on the gondolas. In July we went to a summer holiday in Canada and went to the rodeo.
“She was the bubbliest wee baby. She barely cried. Everyone said we got it so lucky. As long as she was fed and had a wee sleep she was in the best form. She ruled the house.”
She was born in February, but developed a cough in June.
A trip to the doctors led to an MRI scan which led to the diagnosis of Gaucher disease.
The condition is extremely rare, with a one in 20 million chance that anyone will have this condition.
The couple took part in a clinical trial to see if they could help their daughter, but it was not to be. She died in September.
Orla said: “The nurses and doctors were absolutely outstanding.
“A lot of them still keep in contact with us. They were in my house at Christmas.
“We are meeting up at the marathon. Those doctors only knew me for three weeks, but we have built a lifetime connection. You are not just a number.
“People say bad things about the NHS but they are unbelievable. They don’t just clock out and forget about you.
“There were consultants that I saw there all the time. I said to them I’ve been living at the hospital for the three weeks but that they never go home. They were like ‘I know, it’s my day off, but I wanted to come in and do this test, and then I thought I’d call down to see you’. That’s the type of people they are. They couldn’t do enough for you. They gave me their number.
“All staff, from domestic right up to consultants, were amazing.
“Not to sound cheesy but angels isn’t even the word for them. They are unbelievable.”
So, the experience of being helped by the doctors in the Royal, and with working with those from the Gauchers Association who are learning about gene therapy to help the condition, Orla and Andrew felt compelled to raise funds for those two good causes.
But as they raised funds Orla also realised that there was another purpose to their campaign.
“I saw a statistic that one in 100 children are born with a genetic condition. It is something we don’t hear about until it happens to us.
“When it happens, you can feel alone.
“You feel like a stranger sometimes. For a month after I felt strange being out of the house. If you were in the house you felt that no one was going to ask you questions.
“I found that it helped to read about other parents doing fundraising. That gave us a push to do something.
“A lot of my patients come in and tell us about conditions that their children had.
“I’ve realised that in my job. I see people and I think they have a perfect life but they have confided in me about their child loss. You wouldn’t have had a clue. You don’t have a clue what anyone is going through.
“So, it is important to get the story out and spread awareness of child loss.
“The more we talk about it the better it is for people’s mental health.”
Orla said she felt compelled to help other people in the same situation who might be struggling.
“I am back in work and my life has changed but up in the Royal there are still another Andrew and Orla lying beside their wee one.
“It gives you a purpose and a meaning to go on, and a real push to say: ‘What are we going to do now?’”
So on April 30, Orla’s husband and brother will go to Belfast and run the marathon and carry the memory of baby Ellen with them to raise money but also to raise awareness and keep the happy memory of their daughter alive.
Orla said: “I want people to see her as amazing and having done a lot of things.
“She loved laughing and shouting, just a lovely wee baby.”
If you would like to support the family’s fundraising efforts, you can do so by giving a donation via https://www.justgiving.com/team/Ellensmarathon
