Wish stories

When Susan’s 20-week pregnancy scan revealed that daughter Chloe had a heart condition she thought the life-altering news would end there. What shocked mum was to learn that twin sister Lucy also had a heart condition shortly after the twins were born. As Susan shared, “When they were born Chloe was taken immediately to the ICU, but Lucy stayed with me. We noticed that her breathing was rapid, and she looked a little grey.”

Chloe was missing her right ventricle, one of the four chambers of the heart that pumps deoxygenated blood to the lungs. Meanwhile, Lucy was discovered to have two holes in her heart. Following this was a whirlwind first few years for the twins, dominated by surgeries:

“Chloe had two surgeries in her first year of life. When they were around six-seven-months-old Lucy caught an infection but was also very underweight as she was using all her energy to breathe. We stayed at the Royal Belfast hospital for sick children for two extended stays. We then had to go to Birmingham for Chloe’s other surgery. On the same week, Lucy had her open-heart surgery.”

After Covid caused a delay in Chloe’s third and final surgery, the then five-year-old underwent surgery just two days before her sixth birthday: “Because she was older, she remembered it more.”

The impacts on the twins and the family were many. As mum told us: “It was quite isolating in that first year because we spent a lot of time in hospital. I was in hospital with Lucy for extended periods. We couldn’t have any visitors because of infections. It wasn't a normal maternity where you go out for coffee.”

The uncertainty that surrounded their lives meant that the family found it hard to make plans for the first two years of the twins’ lives. Play clubs that charged a monthly membership were ditched in case the twins couldn't attend due to their conditions.

After a hectic first few years, things have settled down for the twins: “It's easier now - but the worry is always there. We’re always looking for the worst-case scenario. There’s always the uncertainty with their conditions, but we put it to the back of our minds.”

Chloe currently undergoes reviews for her condition twice a year with Lucy having one annual review. As mum told us “Chloe's diagnosis means she will be under medical supervision for life and will take medicine for life.”

But the twins' conditions don’t stop them from living every day to the fullest! “They both do karate, they both sing, they play the violin, they’re starting gymnastics, they can do anything! We need to make sure that Chloe takes more rest, but the heart is a muscle that needs to be exercised so we do try to keep them as active as possible!”

Since the age of 18 months, both Lucy and Chloe attended groups for children living with heart conditions. It was through this group that mum first heard that her daughters could have a wish: “I phoned and said this is what my girls have, and Make-A-Wish said they’re eligible! We got the form in for both of them. They reassured us they could both have wishes- it was great!”

After hearing that the girls were eligible for a wish, the twins had their wish discovery calls to come up with some ideas about what wishes they might want. “The referral process was great! It gave us something to look forward to. It was really exciting talking to the girls and asking them what they want to do. We thought it would be so good to make memories with them, and they haven't been on holiday outside of Northern Ireland.”

With this in mind, it was no surprise that they chose wishes that would provide getaways for themselves whilst creating lasting memories with their parents.

Their choice of wish perfectly matched Chloe and Lucy’s personalities. Chloe is extremely adventurous, and so longed to zip-wire through a forest. “She’s a daredevil and loves adventure!” Said mum. Lego-fanatic Lucy loves building complex Lego builds: “From a very young age she would build things that older kids would!” So Lucy wished to go to LEGOLAND where she could immerse herself into a world of Lego.

Ahead of Chloe’s wish, which happened just after the girls broke up for the summer holidays, the twins were buzzing! On 30th June, the family started their trip to Center Parcs Newark. Taking a boat from Belfast to get to Liverpool was a highlight for the twins, who had never been on a boat before, nor had they left Northern Ireland. “It was actually quite relaxing and added to the adventure element of the wish!” said mum.

At Center Parcs, Chloe was able to experience all the daredevil activities the resort had to offer:

“They went quad bike riding and Chloe really loved it! The pool was great for them as well! They went to the pool every day. She loved it, we all did!”

The family then set off on Lucy’s wish to go to LEGOLAND the following September. As mum told us, “Having her wish in September gave us that gap to appreciate Chloe’s wish before having Lucy’s wish. It worked out so well!”

The twins were excited to once again experience a boat as the family took the ferry from Belfast over to Liverpool on 1st September.

Upon arrival, the family checked into their hotel, a highlight for Lucy: “She requested a Lego Friends hotel room at LEGOLAND which she loved!

“Their favourite thing was probably the rides in the park. I think also the fact Lucy could go anywhere and get Lego was great to her!”

Having a wish allowed the twins to feel just like other kids their age: “It made them feel like anyone else. They have friends who have travelled and gone to Legoland and Center Parcs. Now they've been able to do these things as well.”

Their wishes also gave them needed time away from the medical world: “Chloe will ask ‘Are other people born with hearts like mine, why was I born with a heart like this?’ It's so nice for them to have an experience that doesn't require a doctor, nurse, or needles. It makes them feel special. It makes you forget about any difference between them and people who haven't had a heart condition.”

Mum is now extremely grateful for the experience Lucy, Chloe, and the family were able to have together. Now she encourages people to support the charity, to help grant wishes just like her daughters.

Recently, Susan has gone from benefitting from a wish to helping wishes happen, by running the London Landmarks Half Marathon in support of Make-A-Wish on 6th April. “Their wishes made them feel like they’re the same as every other kid. We were so appreciative of their wishes - I needed to do something to give back.”