Leilahni’s Nobu Hotel London Portman Square Wish

Leilahni’s mum, Laura, discovered she was pregnant later than most, at 20 weeks along. To her shock, the initial scan revealed that Leilahni might only have two heart chambers, instead of four. After further scans at Great Ormond Street Hospital, doctors confirmed that she only had one ventricle, leaving her family to process the diagnosis of hypoplastic left heart syndrome, before she was even born.

“It was a shock,” shared Mum. “We were told her chances of survival were slim and that she wasn’t likely to make it, all that grim stuff they have to tell you. We made a decision to see how she’d get on.”

Leilahni underwent her first surgery at just seven days old, followed by another six months later.

“As a toddler, she was always out of breath. After two more surgeries, her oxygen levels were higher. However, after her final procedure, just before she was due to start school, her health completely deteriorated and she went into complete heart failure. There was nothing else they could do operation-wise. She had a new system in place following a Fontan procedure, but it had completely failed,” explained Mum. “They said we had to put her on a ventilator and essentially let her go into a vegetative state.”

However, Leilahni kept fighting and managed to build up her strength again, with her mum advocating for her every step of the way. After a long recovery period, the family were allowed back home, carrying the hope that Leilahni would be eligible for a heart transplant.

Although the journey to getting on the heart transplant register wasn’t straightforward, Leilahni was eventually told she was a good candidate in 2019 and from then on, it was a waiting game, all whilst ensuring she didn’t get sick so that she was stable enough for the surgery.

“After she got diagnosed with heart failure COVID hit, which made things even more difficult, especially for her sibling. It took her a year to recover, so I had to take her out of school, which was very hard for her. She was on palliative care, on an end-of-life plan, and I was trying to make her happy as long as I could until we heard about the heart transplant.”

“It felt like a train journey, where you don’t know when you’re going to get off. You keep going, keep living, keep thriving. There were a lot of hindrances but she persevered. Luckily, she never got sick but she found going to school hard, as she couldn’t manage running around and playing games with the other children, as well as being a year behind.”

In 2025, the family finally got the call they’d been waiting so long for and Leilahni underwent a heart transplant in November.

“She’s doing amazing post-transplant,” Mum said. “We’re just going through the motions at the moment, maintaining her medication. We got through everything by the grace of God and because of the efforts of the amazing doctors, nurses and surgeons at Great Ormond Street Hospital, as well as her school.”

Prior to her heart transplant, whilst Leilahni was at Great Ormond Street Hospital for a routine scan, the family found out that she was eligible for a wish. As she is super close with her sister, Akaila, she knew from the beginning it would involve her, giving the sisters an opportunity to reconnect after a difficult period.

“She’s always loved role-playing with her sister. They have a hotel game they play at the moment, where they put posters up and take luggage and food trays out so she came up with the idea of being the manager of a posh London hotel for the day!” laughed Mum. “She was so excited! She got her hair done and the girls got to pick new clothes from Peacocks, which was really nice. They were counting down the days and talking about it every day after school!”

On the day of the wish, Leilahni and her family were given a warm welcome by the VIP manager at Nobu Hotel London Portman Square, who took her and sister to get their ‘work contracts’ signed before the day began! To kick off her schedule, Leilahni led a morning meeting with the hotel staff, followed by a tour of all the different departments so that she could ensure everyone’s job was being done correctly. She also got to welcome a VIP guest, hand-selecting a pastry and writing a welcome card for her! After their busy shift, the family got to enjoy some downtime the next day and spent it exploring the sights of London.

“She loved all of it but her favourite bit was pretending to kick a troublemaker out of the hotel!” laughed Mum. “The wish has allowed us to see things in a different way. After everything she’s gone through, this is the cherry on the cake. Leilahni’s had a lot of stuff to deal with, then she had her transplant, so getting her wish after was a huge thing for her. It’s helped her hone in on what she wants to do as well – she's realised she wants to go into hospitality. It feels like a recognition of her struggle and a reward.”

Reflecting on the experience overall, Mum shared: “Thank you. Make-A-Wish helps families and children be seen and given a voice and a platform. It’s one day, one moment where they can forget what they are going through and it has a huge impact on families and children's lives.”