It was just a few days after Ellie was born that they realised she might be ill. 

“She was placed under special lights nearly as soon as she was born… we noticed after 16 days. Her eyes remained yellow, her skin remained yellow, and then they told us she had jaundice,” says Jes, Ellie’s mother. 

Tests at Mater Dei confirmed the worst: Ellie had an enzyme missing and would need a liver transplant to survive. She was diagnosed with Crigler-Najjar syndrome. 

If the syndrome remains untreated, it can lead to brain damage in infants. “If it gets to her mind, she’ll become a cabbage,” said Jes.

At just one and a half years old, Ellie has gotten used to the flats offered by Puttinu Cares in London. She’s been there for 7 months, spending 12 hours a day under photo-therapeutic lights. 

She even needs to sleep with nothing but a nappy due to the lights.

Yet, in the face of all of this, Ellie is keeping strong.

“She’s a very happy girl, you have to see her, and she isn’t in pain. She loves playing with my tablet – she likes the lights – and if you give her some pasta, she’ll be a very happy girl,” laughs Jes.

However, it isn’t easy on Jes and her father Ray to see their daughter go through this.

“When you have a little baby, you just want to cuddle her and pull her close and hug her – but I can’t because of her treatment,” says Jes. “It’s heartbreaking.”

They now wait in London for a liver to become available.

“We miss Malta a lot, and we don’t know when the transplant will happen, but we need to stay here in case a liver comes in with the correct type of blood we can go straight to the hospital to do the transplant,” she said.

“Then she won’t need the photo therapy, and I can finally sleep next to her,” said Jes.

Jes is grateful for the incredible and unending support her family has received.

“First I spent two months living in Mater Dei, and I want to thank Professor Soler and all the staff in the Disney ward for their support,” she said.

She also wanted to express her gratitude for all the help she found at Puttinu Cares. 

“Thank God for Puttinu Cares – we came to England knowing no-one, we are not working here, how could we have lived? Because of Puttinu Cares, the accommodation is free, and we thank the Maltese government for taking care of the one hour taxi rides that take us to hospital,” Jes says.

“I also want to urge the Maltese people to reach into their hearts and help support Puttinu Cares this year. I’ve met so many patients while here, and thank God Puttinu is here to help them,” she said.

Tune in to TVM’s Xarabank on Friday 30th March for a special episode in aid of Puttinu Cares.

What do you hope for Ellie?

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Johnathan Cilia

Johnathan is an award-winning Maltese journalist interested in social justice, politics, minority issues, music and food. Follow him at @supreofficialmt on Instagram, and send him news, food and music stories at [email protected]