This year Grace Westwood will finally spend Christmas at home with her family.
For the first time, she will sit by the tree and tear the wrapping paper from her presents.
But the three-year-old has already received the greatest gift of all.
Grace was given a new heart in May. It was a moment mum Becci and dad Darren feared might never come. She had already spent two years in hospital, connected to a mechanical heart and suffered a stroke that temporarily paralysed the right side of her body.
Becci says: “Last Christmas was a scary time. I started to wonder if we would ever get home. I would cry while she was asleep, then try to get up the next day and be positive again.
“We spent so much time apart while Grace was in hospital. This year, we are going to sit on the sofa in our pyjamas, watch Christmas movies together, and enjoy every moment.
“It’s those little things that most people take for granted. The chance for Grace – and for us as a family – to be normal. We have dreamed of this for so long.”
Now Grace’s family have a new wish – that her friend Beatrix will get the same gift.
Beatrix, who turns two next month, has already spent seven months in hospital, hooked up to the same machine that kept Grace alive while she waits for a new heart.
She is one of 228 children spending Christmas on the transplant waiting list.
Beatrix’s dad Terry says: “Grace has learned to walk in hospital. She’s had all her baby teeth come through and is learning to talk. She is making progress every day.
“But every day, there’s also the risk that her body might say it’s had enough. We didn’t know if she would make it to Christmas and we don’t know how long she can wait for a new heart.”
There are now 80 more children waiting for a transplant than there were in March 2020, an increase of 54 per cent. But with just 50 child donors per year, not all will receive a new organ in time.
In the last decade, 144 children have died waiting for a transplant. Half of those were children like Grace and Beatrix who needed a new heart.
That is why the Mirror is urging readers to discuss organ donation with their family this Christmas.
Terry knows how important that is. His daughter Isabel was stillborn in 2018 and, while his wife Cheryl immediately knew she wanted to donate her organs, he was reluctant to do so.
He says: “I was so emotional, I couldn’t make rational decisions. Every fibre in me just wanted to protect her and make sure she was left alone.
“I only agreed to donation because Cheryl had read an article about organ donation and she made me think about how we could prevent other families suffering the same pain.
“It’s comforting to think that donating Isabel’s organs may have helped save other children.”
Beatrix had just returned from a family holiday to Walt Disney World in Florida in May when she became lethargic and stopped eating.
At first her family thought she had Covid like her mum and her older sister Eliza, 12.
But when she stopped drinking, she was taken to the Freeman Hospital in Newcastle and diagnosed with dilated cardiomyopathy, an enlarged heartthat struggled to pump blood around the body.
Days later her heart stopped beating after surgeons fitted a Hickman line into her chest.
Terry, a police sergeant from Burnopfield, in County Durham, says: “We heard people shouting for equipment and they had to do CPR to bring her back. They told us they would be surprised if she made it through the night. It was torture.
“They said the best course of action would be to connect her to a Berlin Heart. Families usually get 40 days to prepare time before that happens. We had five minutes.”
Beatrix made remarkable progress after the operation and was able to leave intensive care to return to the cardiac ward just 10 days later. However, she will not leave the hospital without a transplant.
Terry says: “It’s a constant worry. We have seen children like Grace have a transplant and do really well. But we’ve also seen children who haven’t made it.
“I think about Grace and her parents a lot, particularly when I don’t know how to keep going.
“Knowing what they endured for so long, it is inspirational to see how they have come out the other side. That gives us hope.”
Grace was rushed to hospital with an enlarged heart in March 2020 and suffered eight cardiac arrests in a single day.
She was airlifted from Birmingham to the Freeman Hospital as the country went into lockdown.
Realising that Grace faced a long wait for transplant, the family eventually moved to Cramlington near Newcastle, to be closer to the hospital.
Grace spent a year on a standard Berlin Heart – and was unable to see her big brother Josh, aged four – for most of that time, before becoming the first child in the UK to be fitted with a new, mobile version. That allowed her to leave the ward for short periods to play outside.
Becci said: “She was really well until October last year when she had a stroke.”
Thankfully, Grace made a good recovery and finally had a heart transplant in May.
Becci says: “Grace is like a different child since her transplant. We can’t thank the donor family enough. They have saved Grace’s life. We just hope the families we met and the friends we made on the ward get their happy ending too.”
