A four-year-old girl, who was born at Evelina Hospital with a tumour ‘the size of a lemon’ on her heart, is fighting through her condition.
Amelia Kan has a rare genetic condition called tuberous sclerosis complex which causes non-cancerous tumours to grow in different parts of her body.
Now four years old, mum Weeta Kan describes her as a “fighter who is my hero.” As well as her condition, she was treated for a rare kidney cancer last year which she also overcame.
Having truly defied the odds, Amelia is preparing to start school in September.
Her family is thanking clinicians at Evelina London Children’s Hospital for saving their daughter’s life.
When doctors were treating her, they said she had some of the biggest tumours they’d ever seen, with one the size of a lemon.
The one on her heart was first identified during mum Weeta’s routine antenatal scan when a sonographer noticed a dot on the left side of Amelia’s heart and referred her for further investigations at Harris Birthright Centre at King’s College Hospital.
This led to routine investigations weekly so they could monitor Amelia’s condition.
Weeta, from Bromley in Kent, said: “It became routine during my pregnancy that we had scans on a Tuesday and blood tests on a Friday.
“Sadly, we kept being told the tumours were multiplying and growing.
“It was just bad news every time. As the scans continued, we realised how serious Amelia’s condition was.
“She had so many tumours, one was squashing her lungs and another on the mitral valve in her heart. We decided on the name Amelia as it meant fighter – and she’s lived up to her name.”
Amelia was rushed to Evelina London’s neonatal intensive care unit for urgent treatment, where she spent several months receiving chemotherapy to reduce the size of the tumours.
The effects of the tumours and chemotherapy damaged a valve in Amelia’s heart, resulting in her needing three open heart surgeries when she was one year old.
Aaron Bell, paediatric cardiologist and head of service at Evelina London Children’s Hospital, said: “Tuberous sclerosis complex isn’t common, we typically see around six children a year with it. However, Amelia had some of the biggest tumours that we’ve ever seen, and there was a real concern that she wouldn’t survive being born as some of the tumours were compressing her lungs but Amelia surprised us from day one.”
Weeta continued: “Amelia is now four… and she’s grown into a crazy little monkey who doesn’t listen! She’s my amazing little hero who has a very strong character. All of the teams who have cared for Amelia are amazing. It’s because of Evelina London that she’s alive.”
“In particular Sujeev Mathur from the cardiology team is incredible, we’ve had to make lots of difficult decisions but we agree with everything he has said. Pankaj Mistra from the urology team treated Amelia like a VIP from day one. Trying to make friends and put her at ease. We are so lucky to have them on Amelia’s team, without them she wouldn’t be here.”
Last year, Amelia developed a rare kidney cancer known as renal cell carcinoma, after a tumour was found in her kidney.
In August she underwent an operation to remove the tumour and part of her kidney, in a procedure known as a partial nephrectomy.
Amelia will continue to be monitored under the different specialist teams across Evelina London as she grows up.