The condition means Willow is unable to breathe by herself, and when she was four weeks old, Kelly and Damien were given the option to switch off her ventilator.
They refused to give up on their daughter and now, aged two, Willow has beaten all the odds and continues to improve every day.
Willow is connected to a ventilator 24 hours day and her condition can worsen during the night. Two nurses care for Willow between 10pm and 8am, six days a week, but the couple still find it hard to relax and will comfort their daughter through the night.
“It’s quite overwhelming knowing we are keeping our daughter alive every day. It’s a big responsibility and can be hard at times,” said Kelly.
Willow spent her first three months in hospital and at four months old, she was referred to Tŷ Hafan, the family hospice for young lives.
Willow receives short break care at Tŷ Hafan, which allows Kelly and Damien to have a much-needed rest. “She loves it when she stays,” said Damien. “She has her own patio with a sea view. Her room is decorated all pink and girly and she loves the star lamps at night.”
“Tŷ Hafan has helped take away our stresses,” said Kelly. “Having that break helps us cope so we can carry on with the next few months. We don’t realise how stressed we’ve been until we’ve had that rest.”
Willow was also born with Nager Syndrome, which means her cheek and jaw are undeveloped. To add to her problems, she has two fused vertebrae, a club foot and is deaf.
But Tŷ Hafan’s support has enabled Willow to achieve more than she was ever expected to. She now plays, verbalises and is even starting to stand on her own.
“When we were told she held a rattle for the first time at Tŷ Hafan, we couldn’t believe it! They spend hours giving different therapies in the music, sensory and play rooms – it makes such a difference to her life.”
A Tŷ Hafan play specialist also visits Willow at the family’s home in Ystrad. The sessions not only develop Willow’s communication skills, but also show Kelly and Damien how to play with their daughter to continue her development.
A family support worker is also always on standby for the family 24 hours a day, offering advice and much-needed emotional support.
Despite facing difficult times, Kelly and Damien wouldn’t have Willow any other way and feel very lucky to have such a beautiful daughter.
“We are incredibly proud of Willow. She brings so much joy to our lives and it’s lovely to know everyone at Tŷ Hafan adores her just as much as we do,” said Kelly.
"And although we don’t want to think about it, if in the next month, or year, she does pass away, Tŷ Hafan is where we’ll want to be.”
The couple can’t thank Tŷ Hafan enough and Kelly is planning to take part in Tŷ Hafan’s Midnight Sleep Walk to show her appreciation: “They are like stars in the sky,” said Kelly. “They are all really special to us and we want to do anything we can to show our support.”