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Cambridgeshire girl Isla, 9, enjoys a Disney World Christmas surprise after 14 operations

Nine-year-old Isla Hastings was excited to be going to Walt Disney World with her mum and brother as a Christmas treat – but she was overwhelmed when she discovered the real reason they had flown out to Florida.

Thanks to a secret plan by Isla’s mother Nadine Hastings, the little girl, who suffers from a vanishingly rare genetic condition, has finally met her American penpal Audrey, who was born with the same syndrome.

Isla, left, and Audrey
Isla, left, and Audrey

There are only 300 cases of Freeman-Sheldon syndrome in the world. Both Isla, from Cambridgeshire, and Audrey, 10, from Texas, have the condition, which is caused by a gene mutation that affects the spine, mouth, hands and feet. Both girls have scoliosis, which is the curvature of the spine, and arthrogryposis, which causes joint stiffness.

The families have been in touch online since Nadine began chatting to Audrey’s mother, Laura Rogers, in a global forum about the condition shortly after her daughter’s diagnosis at Addenbrooke’s Hospital. They have been close since the girls were babies, but for their children it has been vital to know someone going through the same experiences.

Nadine told the Cambridge Independent: “Isla has been finding school hard recently. She’s just become very aware of how different she looks, and that she can’t do certain things and that’s upsetting because she wants to play with her friends. She wants to run around and be the same as everybody else. And obviously she can’t.

“The school has been really good and she has been there since nursery so the other children know Isla and are friendly.

“But I know that it’s hard living in a world where difference isn’t always accepted, so I wanted Isla to have a friend who was going through the same things as her. I just thought if we could make that friendship when they were little, then it would be a big support when she was older and possibly facing bullies or people staring. She would have that buffer of friendship in place.”

Nadine and Audrey’s mother Laura speak regularly online and the children send each other messages and play online games such as Roblox.

Dylan, Audrey and Isla enjoy a ride
Dylan, Audrey and Isla enjoy a ride

But after hearing that Laura was planning a festive trip to Disney World, Nadine suddenly asked: “Can we come too?”

Isla has already endured 14 operations because of her condition and is about to have another.

Nadine said: “It’s been a difficult year and I just wanted to do something happy for the children.”

Since then, the pair have been planning to surprise their daughters with a meet-up and visit to Disney’s Magic Kingdom. And this week it happened.

Nadine said: “When we arrived in Florida I got a text saying our villa was only an eight-minute drive from the Rogers family, so I jumped in the car with the kids. As we pulled up at their house they spotted us first and I ran over to Laura to give her a hug and we both burst out sobbing and held each other tightly.

Audrey and Isla in Florida
Audrey and Isla in Florida

“I pointed out Audrey to Isla and they both looked nervous at first. The girls began walking up to each other slowly – I don’t think they knew what was happening at first. Laura and I had to stop and say ‘It’s OK, these are happy tears’, because I think we had unnerved them. Isla asked Audrey ‘Do you like shopping?’ Audrey said ‘Yes’. Isla slipped her hand into Audrey’s and they have been inseparable ever since. The ice was broken and they haven’t stopped talking.”

For Nadine it was a poignant moment.

“The girls look so alike,” she said. “They could be sisters and they even have the same walk. I’m so glad they have each other. Every time we looked at them and they did something cute together, it was just heart-warming. It was so good to meet Laura face to face. We have been able to chat about things like the operations coming up. So it’s been really good.”

She said the families planned to go to the Disney parks and go on all the rides together. They were also going to a character dinner where they could meet their favourite princesses and other characters. Isla loves Sleeping Beauty, according to Nadine, and her brother Dylan, 6, is a big fan of the mermaids, especially Ariel.

The women met in a Facebook support group for families coping with the condition. Nadine found the group when she began frantically searching online after Isla was born.

Isla, Audrey and Dylan enjoy their holiday
Isla, Audrey and Dylan enjoy their holiday

She said: “I was very scared when Isla was born. I had a very traumatic birth and she was taken straight off me to intensive care. I didn’t get to hold her.

“They saw her, pressed the red button and off she went. I didn’t get to see her for quite a while after and when I did she looked very different from other babies and we didn’t know what was wrong. And then it was a case of genetic testing, which was rare then and we had to apply for funding. But the genetics team at Addenbrooke’s were amazing.

“At that point I wanted to be able to talk to another parent about what might lay ahead for us.”

Isla, from St Neots, is about to have spinal correction surgery to straighten out her spine.

Last year, the little girl raised £11,000 for Addenbrooke’s Charitable Trust (ACT) by taking on a sponsored tricycle ride.

She completed 46 miles on her trike, which she used instead of a bicycle as her disabilities mean that she can not grip bike handles or balance on a bicycle.

Isla Hastings goes shopping in the US
Isla Hastings goes shopping in the US

Nadine said: “We wanted to give something back to Addenbrooke’s as they have been wonderful with Isla and supported her for her whole life.”

She also appears in ACT’s video and advertisement promoting its Christmas appeal to raise funds for specially designed toys at Addenbrooke’s to help children understand their treatment.

For the rest of this week, Isla will be playing with her oldest friend and is a looking forward to the rollercoasters, according to her mum.

You can donate to ACT’s Christmas appeal online at helpyourhospital.co.uk/toy2022 or, to donate £10, text ‘TOY’ to 70560.

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