The two-year-old’s parents said they take each day as it comes
The family of a young girl from Co Down diagnosed with a rare heart condition are on a mission to raise awareness and funds for charity to help others.
Lily Thompson was born 13 weeks premature on March 22, 2024, weighing just 750g. She spent 126 days in the NICU at both the Royal Victoria Hospital and Craigavon Area Hospital, overcoming infections and blood transfusions.
As her parents, Laura and Alan, were preparing to take their little one home after a gruelling hospital stay, they got the devastating news that Lily was diagnosed with pulmonary vein senosis, an extremely rare heart condition.
The condition means the veins carrying blood from the lungs to the heart become narrowed or blocked, with a stark survival rate of just 50% in the first year. Lily is the only child in Northern Ireland with the condition, that we know of.
Speaking to Belfast Live, her parents, Laura and Alan, explained how it was passionate consultants in Belfast and Dublin advocating for their daughter that has helped her treatment.
Laura explained: “Being born prematurely can trigger the condition, but medics or consultants don’t know very much about treating it, and the prospects of it are not great at all.
“The best way to describe it is it’s similar to cancer in the veins between her heart and lungs, her pulmonary veins. It is essentially eating away and closing down those veins. When we found out about the condition, within a week she lost two out of four of her pulmonary veins.
“They can’t treat it surgically in Belfast so we went down to Crumlin Children’s Hospital in Dublin. She goes for a cardiac catheterization, which is a kind of surgical intervention to assess the situation closely. When she went in there we were given the worst diagnosis, that basically she wasn’t going to survive, and there wasn’t anything that could be done for her.
“But by complete and utter chance, a consultant down there had just come back from specialising in the condition in America. We were coming to terms with the news this was going to be the end for Lily, and the next day the consultant came into us and has been really transformational in the care for Lily.
“Trying to help her survive is beneficial because everything outside of her heart and lungs function is pretty good. The consultant in Dublin told us she wanted to give her a chance, and it’s because of her and our consultant in Belfast that Lily is still with us.
“It took us to have passionate consultants to really advocate for her, which was amazing, and we appreciate how fortunate we are.”
Despite her diagnosis, her parents said Lily is still a “fun loving two-year-old who loves to make us laugh.”
Throughout their campaign, a main aim has been to highlight that not all sick children may look stereotypically “unwell”, something the family have found themselves coming up against.
They said: “It can make things quite difficult as people don’t understand how cautious they need to be around them with germs.
“We have lost some friends as they haven’t understood why we’ve said no to so many invites, as we’ve ended up in hospital, or couldn’t bring our child to birthday parties or soft plays as we can’t risk our child getting sick.”
They said Lily is currently “really stable”, with the summer months posing less risks than the cold winter months. Laura added: “They say a magic number is if you get to three years old and this disease has sort of died out, there is hope.
“At the minute she is two and doing very well, the summer is a lovely period of time where she can thrive and grow. But the winter is very difficult, we go back to what you would know as lockdown days. If she gets the cold, she will be hospitalised.
“She’s a real trooper, she takes quite a bit of medication and during the winter she needs oxygen to sleep at night, and she’ll tire very easily. But they’re very small things in the grand scheme of what we thought her prospects were, the fact we still have her with us is amazing.”
Throughout their journey learning about the rare condition, the family said they have had invaluable support from the Children’s Heartbeat Trust, a charity providing practical support to families of children and young people with congenital heart disease across Northern Ireland.
Last year, a golf day raised £30,000 for the charity, with the event returning on August 21 alongside a raffle to win a luxury Mulberry handbag.
Laura said: “Last year we had a conversation saying we wanted to turn a negative story into a positive. Through our experience, a lot of friends, families and colleagues have asked what can they do to help, but there’s nothing, nobody can help the situation. So we thought we would do a fundraiser to give back to the charity.
“My husband Alan is really into golf so I organised a golf day, and we were blown away by the support we received. I have that addictive personality and now want to continue to thrive and do better with it, especially as I know the impact of those funds.
“We are continuing the event this year and as not everyone is into golf, we’ve also set up a giveaway of a Mulberry handbag in a raffle.”
As for the impact support from the Children’s Heartbeat Trust has had on them, Laura added: “After three months in NICU we were in a period of real unknown and fear when we moved back to the Clark Clinic cardiology ward, and in came the Children’s Heartbeat Trust to help.
“They are literally on the ward the minute you arrive. They’re introducing themselves, giving out a little teddy bear, and it feels like there’s a weight lifted off your shoulders. They’re there for counselling support, to share experiences, to even just take you for a cup of tea.
“When we were making our first trip to Dublin, they gave us a booklet on the smallest things like what the room will look like and where you’ll go and what will happen. I love to organise things, so to have that done for us meant we could relax a bit.”
The family said fundraising and raising awareness is a “positive distraction”, and helps them pass on the support they have received over the years.
Looking to the future, they said: “We don’t know from each day or month if this is the month it all goes downhill, we just take each day as it comes.
“The thing we have really learned throughout this is all those little things you thought were going to be the end of the world really don’t matter. The things that would maybe frustrate you before all of a sudden are absolutely menial.
“We really want to raise awareness of the amazing healthcare system we have and that it doesn’t always have to be the sickest looking child that is sick. We want to educate people on that – you don’t know how serious it can be behind closed doors.”
Find out more about Lily Tee’s Golf Day here. You can also enter the raffle for a Mulberry handbag by clicking here.
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