Destiny-Rae's first dialysis-free Christmas

When she was just a few days old, Destiny-Rae was diagnosed with a rare condition called cloacal malformation.

For Destiny-Rae it caused serious problems with her kidneys, as well as other health complications.

It was a challenging time for her mum, Maria, but arriving at GOSH she says she felt a sense of peace.

Destiny-Rae initially stayed on the hospital’s neonatal intensive care unit (NICU).  "It was so calm,” Maria says. “I was told the plan from the get-go.”

To stay close to her baby daughter, Maria slept in charity-funded family accommodation opposite the hospital.

“I would fall asleep holding her hand and the nurses would wake me up and send me to bed,” she says.

After the NICU, Destiny-Rae was transferred to GOSH’s Eagle Ward. This is a ward for babies, children and young people with kidney problems. It was to become like a second home to them.

Destiny-Rae had multiple operations during her time at GOSH, including surgery on her kidneys at the start of 2019.

“It was to create two stents from her kidneys to drain her urine out, it was a short-term solution whilst waiting to start dialysis,” Maria says.

By the summer, Destiny-Rae started to pull the stents out herself and it was decided the time was right to begin dialysis. At first, she had it two days a week, then it increased to three.

She continued to receive treatment at GOSH for four years and would often spend time with the Play team.

“Destiny-Rae loves the Play team. Without them, she wouldn’t have thrived as much as she has done,” Maria says.

Destiny-Rae and Maria have also received support from other teams at GOSH funded by the charity. The chaplaincy team have been a “big source of support” and, when Maria lost her housing, GOSH social workers were on hand to help her.

Over the years, Destiny-Rae has spent the festive period at the hospital, but the teams work hard to help ensure children who are able to can spend Christmas Day at home.

“Destiny enjoyed the run up to Christmas at GOSH,” Maria says. “She made Christmas cards, went to a party in The Lagoon [the restaurant and dining room for parents, visitors and hospital staff] and did all the Christmas activities on the ward.

“We’ve never woken up at GOSH on Christmas morning, dialysis was arranged so either you had Christmas Eve and Christmas Day or Christmas Day and Boxing Day at home.

“They work really hard so you can go home for Christmas, even if it’s just for one day, and I was really grateful for that.”

After a successful kidney transplant in March, Destiny-Rae is now preparing to spend her first festive period dialysis-free. Maria hopes to take her to visit family in the US, which will be her first time on a plane.

"It will be nine months after the transplant, so Destiny should be ok to travel – fingers crossed,” Maria says. “It’s so amazing that this could actually happen! I’m really looking forward to having a Christmas without having to worry about going back to hospital after two days.”

But there are other seriously ill children at GOSH who will be too poorly to go home for the festive season.

That’s why, this Christmas, we’re asking supporters to donate and send a special stocking message of joy and hope to those children.

The stocking messages will be displayed at our Charity Hub in the hospital and help bring a smile during very difficult moments.

This year, our special Christmas card was beautifully created by Destiny-Rae. Take a look on the GOSH Charity Shop!

When you support our appeal, you’ll be giving:

• Joy, helping to fund festive fun like Christmas parties, crafting with the Play team and Santa visits.
• Family time, helping to fund free accommodation right by the hospital, so loved ones can be there from the early morning present opening to the last bedtime story on Christmas evening.
• Hope, helping to fund research into new treatments and cures for the rarest and most complex childhood illnesses. And that means more children can look forward to many more Christmases to come.

For seriously ill children and their families at GOSH this festive season, help us make Christmas feel like Christmas.