A toddler born with a rare liver disease given just two years to live by doctors is celebrating her second birthday after undergoing a life-saving transplant.

Gracie Harwood, from Strood, is lucky to be alive after being diagnosed with Biliary astresia – a blockage in the liver – at just eight weeks old.

Her family was told she needed a life-saving liver transplant and there could be a two-year wait for a suitable donor.

Mum Rae said: “She wouldn’t have made it if we had had to wait that long.”

Jake and Rae Harwood faced every parent’s worst nightmare when their two-month-old baby, Gracie, was taken to hospital with the rare liver disease.

“We hadn’t noticed how yellow she was as we were seeing her every day,” Rae said. “The doctor said she was jaundiced and sent us straight to Medway Maritime Hospital.”

The 30-year-old added: “At the time we did not realise how bad it really was. We thought she would just be put under one of those heat lamps and it would be fine.”

At five weeks old Rae had noticed another unusual symptom which they later discovered was a huge red flag that she was suffering from the rare form of liver disease.

“Her stools were white,” Rae said. “We took her to the doctor but it coincided with me stopping breastfeeding and the doctor said it was probably that.”

They have since found the condition is a blockage in the liver which means the bile is not getting through to colour the stool.

At Medway Martime Hospital, Gracie was diagnosed with liver disease and Rae was told she needed to be rushed straight to King’s College Hosptial in London for an operation.

“I was on my own as only one parent was allowed in at the time. I just broke down in tears and they told me to ring my husband and they would talk to us together.

“That’s when I realised it was really serious because they were making an exception to the one-parent-only rule.”

The family was told if the operation was not successful Gracie would need a liver transplant.

“When she went down for surgery it was the first time we had ever left her,” Rae said. “She had a little tiny baby gown. It was hearbreaking.

“We were told there was a 50/50 chance of the operation working.”

While Gracie waited in the hospital for her operation Rae was able to stay by her bedside but dad Jake, 32, was facing a daily commute from Strood to London to visit his sick daughter.

“It was really hard to be on my own,” Rae said. “Everything is a constant worry. We were both really upset and we needed each other more than anything at that moment.

Fortunately, on the day of the operation, Gracie’s dad Jake was offered a room to stay by Ronald McDonald House Charities, which offers free accommodation for parents with children staying at London hospitals.

“The room was everything,” Rae said. “Jake was worrying every day about how he was going to get to the hospital, not to mention the financial aspect.

“Without the room we would have had to consider parking costs, ULEZ charges, hotel costs or train fare/ train strikes, at a time when neither of us could work.

“We still had bills to pay at home, and we were living out of Costa and Marks and Spencer as they were the only shops in the hospital.

‘She had a little tiny baby gown. It was heartbreaking’

“It would have very quickly become very unaffordable.

“We looked at hotels, even Airbnbs s but to park at near the hospital alone is criminally expensive so you can imagine what hotel prices are like.”

“Having the room took all of that worry away and we could just concentrate on Gracie and her getting better because that is all you can think about.

“It was a situation where we didn’t know if she was going to be okay at the end of this and that just took up all our brain space.”

“Having a room at Ronald McDonald House meant that for the days after her surgery and during her recovery Jake was just a five-minute walk away and could come every morning by 6.30am and stay until midnight.

“It meant I didn’t have to sit alone whilst trying to comfort her when she was crying in pain. She was so tiny that she couldn’t have much pain relief so the first 48 hours of recovery were savage to watch.

“I didn’t have to be by myself when she had the dozens of procedures, bloods tests, sugar level checks, injections and dressing changes.

“No one wants to see their baby go through pain and no one wants to be alone when they have to.

“In the most heartbreaking moments of our lives Jake and I were able to be there for each other and hold hands and do it together and that was made so much easier by RMHC giving us a place to stay.

“It also meant that we could give each respite, Jake was able to bring me food and coffee because the hospitals don’t have to feed parents and there was no way I was leaving her side to go and get a sandwich.”

The first operation was not successful as Gracie's liver was deemed to be too damaged. She now needed a life-saving liver transplant and was placed on the organ donor list.

Rae added: “Her liver disease was progressing and her tiny frail body was malnourished and weak. She itched constantly from the billarubin in her skin.

“She went more yellow, her hair changed colour, her eyes looked smoke damaged, her tummy and pelvis filled with fluid because her liver stopped making the proteins to break it down and allowing her to absorb fat

“She was force-fed through a tube just to keep her hydrated and alive.”

But despite all of this Rae said she never stopped smiling.

“She smiled every day. She was so brave and strong and incredible.”

As the family waited for a match they were told the liver disease had progressed much quicker than first thought and she could deteriorate really quickly.

“We were praying for a match to come through,” Rae said.

Tests finally came back to say Rae was a match to be a living donor for her daughter.

“Being a donor for Gracie was a scary thought,” Rae said. “I had to be tested for everything.”

As they sat in their gowns ready to be taken down for the liver transplant operation on December 16 the highs and lows continued for the family as hundreds of concertgoers were crushed at The O2 Academy in Brixton and emergency beds filled up at Kings College.

“It was the nearest major incident hospital and it was filling up with injured people,” Rae said. “There were no rooms in intensive care so our operation was canceled.”

On the positive side, Gracie was able to spend her first Christmas at home with her family and the surgery was rescheduled for January 13, 2023.

Rae said it is amazing to think Gracie now has a part of her mum inside her.

“She has 20 per of my liver,” she said. “I will always be with her wherever she goes.”

During mum and daughter’s 13-day stay in the hospital dad Jake was able to stay at Ronald McDonald house again so he was close by to offer support.

“Gracie spent the first few days in intensive care,” Rae said.

“She was in a lot of pain but Jake was with her every minute he could be and held her tiny hands as she called out for him.”

The heating engineer was also close by when Rae suffered a medical emergency when she was found unresponsive after the transplant having had an unusual reaction to the morphine.

“It happened late at night and they called Jake and he was able to come straight to me as he was only a five-minute walk away. So he was with me when I was taken back to intensive care.”

With mother and baby discharged and six weeks of recovery time, the family’s rollercoaster journey was not over as Gracie was diagnosed with sepsis and rushed back to Kings.

“That was probably the scariest time,” said Rae. “I know sepsis can get bad really quickly. It was another bump we had to get over.”

Almost a year to the day after Gracie’s transplant operation Gracie is preparing for a huge party to celebrate her second birthday. The family is hosting a raffle and hoping to raise money for Ronald McDonald House Charities.

Anyone wishing to donate can click on this link.

RHMC provides a room for a parent to stay in while their child is in hospital in London. They provide laundry facilities and a fully functioning kitchen with breakfast available.

There is even a large games room and garden where families can be together.

Rae explained: “The ward that Gracie was on was no siblings allowed for infection control, which meant Jake had not seen our son Jack for a long time.

“But thanks to RMHC we were able to take our son Jack up to see his Daddy for the first time in weeks and they were able spend the day in the RMH together.”