‘She can put her stamp on the world’: Meet Emily

Emily’s guardian, Val, first met Emily when she was three months old. She was extremely unwell, and, sadly, things did not look likely to improve.

When Val took her home, they focused on making memories. “She stole our hearts,” Val says.

“Right from the very beginning we’ve made everything about ‘firsts’,” Val’s niece, Amie, explains. “Her first trip to the beach, the first holiday, the first swimming pool. There were a lot of things Emily wasn’t allowed to do, so we had to find different ways to enrich her life and get her to experience as much as she could.”

For the first couple of years, Val and Amie lived in a constant state of uncertainty. Emily had regular heart checkups and underwent numerous procedures and treatments, but her prognosis stayed the same.

“We were just living on a cliff edge. Every day we’d think, is this the last?” Val says.

Despite being in such poor health, as a toddler Emily was a “happy, loving kid” who didn’t seem seriously unwell. She also started developing her own interests, especially a love of music.

"Apart from her nasogastric tube, she didn’t look ill. She was just loving life and loving music,” Val says.

“Right from these early stages, it was obvious she was so musical. She learnt to hum along to songs before she could talk,” Amie adds.

Emily also loved Disney, and Val and Amie decided they’d do whatever it took to get her to Disneyland.

"She turned two in March, and we got her there in April," Amie says. “After that, we carried on making memories.”

By the time Emily was three years old, her heart had stabilised, but it had done so in “the worst possible condition,” Val says.

Around a year later, after multiple scans at GOSH and a series of big conversations between her medical teams, Emily was scheduled in for major open-heart surgery.

"It was really a case of do or die. We either had to go ahead and attempt the cardiac surgery or we would lose her anyway,” Val recalls.

Emily had the surgery in January 2022, but the following day she went into cardiac arrest and had to be put on a type of life support.

The following week, she had successful corrective heart surgery and began to get better. Three weeks later, she was able to go home. Emily is now expected to reach adulthood, something her family never thought possible.

During her treatment, Amie and Val were never far away from Emily thanks to GOSH Charity-funded home-from-home accommodation near the hospital.

“Staying in accommodation is a godsend,” Amie says. “It removes the stress of having to find somewhere to sleep each night and the expense of it, when all you want to be is by her bedside. To know that you have somewhere safe that you can go to sleep, literally five minutes away, was so helpful.”

Emily will need more surgery in the future, but today she’s doing well.

"The main thing is that she’s better,” Val says. “She’s got to have more intervention, but she will have a fuller life and she will reach adulthood.”

Since the surgery, Emily has been under the care of lots of teams at GOSH, including renal and gastro.

“We’ve been to the ZCR, and we’ve done most of the wards now – I think we’ve been to every level. Emily always wants to know which ward we’re going to next,” Val says.

“As soon as we get to GOSH, it feels like a home away from home. It’s a security blanket.”

Outside of GOSH, Val and Amie have noticed Emily’s confidence and independence have soared, especially at school.

"She started the school year off not trusting anyone and she would just sit on the teacher’s lap and hold her hand in her fleece. She wouldn’t touch anything wet or cold, or textured. But now she’s doing everything,” Val says. “She’s painting, she’s trampolining. She goes swimming and goes on school trips once a month.

“They’ve got little Velcro markers along the handrail so that she knows exactly where she is in the school. She’s learning braille and she has a lady who comes in to do cane skills. At the start of the year, she walked with her walker, and she finished the year walking independently with a cane.”

Val and Amie have taken part in various fundraising activities over the years, such as RBC Race for the Kids. They also want to raise awareness of GOSH by sharing Emily’s story.

“We’re not the only family who goes through what we’ve gone through, there’s loads of families out there. If we can help just one other family with our experience, then it's worth it at the end of the day,” Amie says.

“Emily has got an opportunity to live and put her stamp on the world. We have always said she has got her own agenda and, one day, we will know what it is,” Val says.

“We are just the people that are going to support her to get her where she needs to get, with a huge team of people behind us.”

Together, we can help give seriously ill children like Emily the best chance, and the best childhood, possible.

Be part of it.