'My liver saved my baby's life, now she's starring in a GOSH Charity Christmas advert'

After two Christmases spent in and out of hospital with her sick child, Elle Daniel hopes her family can finally spend the big day at home this year. Ruby, two, was born with a rare metabolic condition, PMM2-CDG, affecting many parts of her body, including her kidneys and liver.

In her short life, Ruby has spent more than 700 days in hospital - mostly in London’s Great Ormond Street - and she can be seen shining brightly at the end of the GOSH Charity’s Christmas advert for this year’s festive appeal.

Ruby’s mum, Elle, 35, a yoga teacher, of Highbury, north London, says: “I was so emotional when I was the advert. Christmas still happens, of course, when you have a sick child. It just often looks different. But GOSH pulls out all the stops to make it as festive as possible. There are carols, stockings, decorations - even Christmas dinner. Ruby still plays with the toy she was given last year.”

Ruby’s dad Steve McCann, 43, who runs a consultancy firm, adds: “I couldn’t be more proud, I was moved to tears when I saw the advert. Ruby has been moments from death many times in the last two years, so to see her shining brightly on screen was a joy.”

READ MORE: Great Ormond Street Hospital Charity's Christmas advert - it will move you to tears

The couple discovered they were having Ruby not long after they married in September 2022. Not long after, the couple found out they were pregnant. “We were completely overjoyed,” says Elle, who enjoyed a smooth pregnancy at first.

“But later scans showed the baby’s arms and legs didn’t seem to be growing at a normal rate, so I started having lots of tests. It was a scary time. But tests didn’t reveal anything was wrong - yet.”

Ruby was born at 42 weeks weighing 2.9kg in November 2023.

“We instantly fell in love. She was perfect. Everything seemed fine and we were sent home the very next day,” says Elle.

“But soon it became clear that Ruby wasn’t putting on weight. ‘Failure to thrive,’ was the term used, and she was put on a feeding regime, which did help at first.”

At eight weeks old, Elle and Steve noticed that Ruby’s belly was distended.

“An ultrasound at our local hospital showed excess fluid around her heart, and her liver and kidneys looked unusual. We were immediately blue lit to GOSH.”

There, the gravity of Ruby’s situation became clear.

“‘She’s very ill’ the doctors told us, when we asked if our baby would live,” remembers Elle.

“Their tone changed - that’s when I knew how bad it was,” says Steve. “Ruby had the fluid drained, but it was touch and go. We spent her first Christmas in bits by her bedside.”

Still, the couple never expected to spend their first Christmas with their baby in hospital. But they can’t praise GOSH enough for making it as festive as possible.

“Despite our worry, which was overwhelming, the team at GOSH did everything they could to make our first Christmas as a family special. We ate Christmas dinner in the canteen with all the trimmings, Ruby had a Christmas stocking, and there was a carol concert, which was just beautiful,” says Elle.

On January 14, tests revealed Ruby had PMM2-CDG. She is one of only around 1,000 people in the world thought to have it.

“It was indescribably terrifying,” says Steve. “The tests, the waiting, then the diagnosis: it was a new level of fear for me that I’ve never felt before. It was like being in a film. We kept saying, ‘Is this real?’ ‘Is this really happening to us?’”

PMM2-CDG is a rare genetic disorder where the body cannot correctly attach sugar molecules (glycans) to proteins, causing the proteins to malfunction. This problem stems from a faulty PMM2 gene, which normally provides instructions for an enzyme essential to the process.

Symptoms can vary from mild to severe, including developmental delays, poor muscle tone, and organ dysfunction, with the severity depending on the specific mutations.

There is no curative treatment for PMM2-CDG. Treatment instead focuses on treating symptoms and preventing complications.

“Getting the diagnosis was like being hit with a truck. It was like ashes in my mouth,” says Steve. “You expect to be going to baby classes, not be told about potentially life limiting conditions.” Because Ruby’s condition is so rare, too, the prognosis was unclear.

“We were told she may be severely disabled and never develop in certain areas, or perhaps she might one day be able to go to a regular school with some help - her future was uncertain,” says Elle.

And it’s certainly been rocky for little Ruby, who was first fed intravenously with TPN (total parenteral nutrition), and then fitted with a feeding tube, which she’s had ever since.

Her PMM2-CDG affects her liver, and earlier this year it began to deteriorate. Two catastrophic seizures followed as a result early into 2025.

“We prepared for the worst,” says Steve. “And in April we were told Ruby wouldn’t survive without a liver transplant.” Elle adds: “I held my hand up immediately to be a donor. As her mum, I didn’t hesitate. Luckily, I was a match.”

In June Ruby had a liver transplant. It was a terrifying moment for the whole family, as both mum and baby went into the operating theatre - but thankfully everything went well. And, miraculously, since the transplant, Ruby’s condition has improved.

“Almost immediately she began to gain weight and become more robust. As a result, her cognitive development has come on too, and she's started to sit up for the first time,” says Elle. “Tears streamed down my face, I could have burst with pride as I watched her.”

Steve says: “We feel like we can let out a breath for the first time in months.” Five months on, little Ruby is doing well but the Daniel-McCanns remain in GOSH because back to back infections have meant Ruby has needed supplementary oxygen. Non verbal, she is also still fed via a tube.

“While the future remains uncertain, we now have renewed hope,” says Elle. Steve adds: “And there are some incredibly promising new treatments, like gene therapy, in the works, that might be transformative for our girl when they are finalised. For the first time in a long time, the future looks brighter.”

During her time at GOSH, Ruby has received support from the GOSH Charity play team to provide development and joy, and particularly loves music.

The GOSH chaplaincy has given blessings to Ruby and Steve in their darkest hours and the charity also provides hospital accommodation for those who need it, along with research into cures.

Watching the GOSH Christmas ad - which is being released on social media on Monday 10 November, and on TV on November 17 November, was a proud moment for Elle and Steve.

He says: “Ruby has spent most of her short life at GOSH and the place really is like family. To have her as part of their advert was very emotional. Some days having a sick child feels like being in a war, constantly getting hammered, and at every step of the way, they are there providing support.”

But stardom aside, their biggest Christmas wish may still come true.

“There’s a chance she’ll be able to come home for Christmas,” says Elle. “And if that chance becomes a reality, it will be the greatest gift we could ever imagine.”

*No child should have to spend the festive period in hospital. But when they have to, Great Ormond Street Hospital Charity are there to make it feel like home. You can support Great Ormond Street Hospital Charity's Christmas appeal and donate here

READ MORE: 'I went to see this year's St Pancras Christmas tree and ended up crying'