Brighten a life at Ty Hafan’s neon night
Updated 10:26am Tuesday 6th May 2014 in Penarth news
TY HAFAN is asking mums, sisters and aunties to ‘go neon’ for its hugely popular annual Midnight Sleep Walk in Cardiff.
Hundreds of walkers will once again be hitting the streets of Cardiff wearing pyjamas, together with dazzling neon accessories, for the event on Friday, May 16, to raise vital funds for Ty Hafan.
The brightly-coloured theme has been launched as a tribute to life-limited children and young people who bring much happiness and sparkle to the lives of their families.
The six-mile midnight walk will start from city’s iconic Millennium Stadium, and the event will include entertainment beforehand and free tea and cake for walkers at the end.
Many mums of the children supported by Ty Hafan will be taking part, including Kelly Davies from Ystrad.
Kelly and her partner Damien were devastated when they were told their daughter may not survive her first few days due to a life-threatening condition called central hypoventilation.
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.
“She continues to surprise us and is such a little fighter,” said Kelly.
Willow is connected to a ventilator 24 hours a day and her condition can worsen during 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.”
Willow spent her first three months in hospital and at four months old, she was referred to Ty Hafan, the family hospice for young lives.
“I was apprehensive at first. I didn’t want her going to a hospice,” said Damien. “I thought it would be clinical and sad, but I couldn’t have been more wrong. It’s a wonderful place; so happy, welcoming and friendly.”
Willow receives short break care at T? 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.”
“T? 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.”
Ty 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.
“We know that without Ty Hafan, she wouldn’t be achieving her full potential,” said Kelly. “Every time she stays at T? Hafan, we can see her developing.”
A Ty 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 T? 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, T? Hafan is where we’ll want to be.”
The couple can’t thank T? Hafan enough and Kelly is planning to take part in T? 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.”
Jessica Morgan, events officer at Ty Hafan, said: “The Midnight Sleep Walk is a fun-filled event that helps raise money for families with life-limited children. If we have 500 Midnight Sleep Walkers, each raising £100, that’s a fantastic £50,000 to help Ty Hafan. So come along and help us raise plenty of money at this year’s Midnight Sleep Walk.”
To register, please visit midnightsleepwalk.co.uk or for more information call 029 2053 2282.