Alfi’s story at heart of Tŷ Hafan bid to raise £350,000 in just 60 hours
By Nub News Reporter
21st Nov 2023 | Local News
Tŷ Hafan Children's Hospice is getting ready to launch its second 'When Your World Stops' fundraising appeal with its target to raise £350,000 in just 60 hours.
The appeal, with Ammanford-born Alfi's Morris's story at its heart, will go live at 10am Sunday, 26 November and will run through to 10pm Tuesday, 28 November.
All donations made to Tŷ Hafan during that time will be match-funded meaning that one donation will have double the impact.
Lynne Phelps, Head of Family Wellbeing and Outreach Services for Tŷ Hafan, says: "We know how much a family's world changes when a child is diagnosed with a life-shortening condition.
"It changes again when they realise they must consider end-of-life care and again when their child dies.
"Tŷ Hafan is here to provide endless support to families from the first moment their world changes.
"We can't give those children more time, but with the help and generosity of our amazing supporters old and new, Tŷ Hafan can give children in Wales and their families the support they need to make a short life a full life and, when the time comes, provide ongoing bereavement care."
Sara and Jason Morris and their 10-year-old daughter Besi, lost their beloved son and twin brother on St David's Day 2015, just before Alfi's second birthday.
They have chosen to share their story now to help Tŷ Hafan to continue to support families who so desperately need the services it provides.
"On 1st May 2013, Alfi Jay and Besi Jane entered into the world," says Sara.
"Our life became perfect in those few seconds and the years of gruelling IUI and IVF treatments for our precious miracles were all worth it.
"But the happiness didn't last long. Within an hour of our beloved babies' arrival, Alfi became very poorly and was rushed to the baby unit.
"The next few months became a blur. Alfi had been diagnosed with Neonatal Marfan Syndrome and we knew his prognosis wasn't good. Life with the twins was precious and we tried to make as many memories as we could."
Tŷ Hafan was recommended to Sara and Jason when Alfi and Besi were nine months old. They visited the hospice for their first and only short break stay just before Christmas 2014, where they were able to relax a little as a family knowing that Alfi's medical needs would be cared for.
"At Tŷ Hafan, me and Jason had the opportunity to spend quality time with the twins," Sara remembers.
"For the first time, we didn't need to set our alarms, worry about medication or worry about forgetting to pack all of Alfi's medical equipment. The responsibility was taken away.
"That weekend will stay with us forever. We played in the park, swam in the hydrotherapy pool, visited Santa and ate Christmas dinner as a family. Alfi even ventured off on his own with his one-to-one nurse carer to see Anna, Elsa, Olaf and Santa.
"From that moment on, Tŷ Hafan became a huge part of our lives."
Alfi died peacefully in his dad's arms on 1st March 2015, Sarah and Jason's wedding anniversary.
"Since his passing, Tŷ Hafan has been a huge support to us. We continue to have support from our Family Support Worker, and we know that Tŷ Hafan is there for us whenever and however we need them," says Sara.
"We visit Tŷ Hafan on a regular basis. I can't begin to describe what Tŷ Hafan means to us as a family, but one thing I do know is I will be eternally grateful for the memories they have allowed us to make and continue to make to this day."
John Lowes, Head of Fundraising for Tŷ Hafan says: "This is a crucial fundraising campaign for us, and we are immensely grateful to the Morris family for their bravery and generosity in sharing their story to help us to raise as much money as possible.
"To get involved, please sign up to be an appeal champion now and share information about the appeal on your social media and with friends, family, colleagues and neighbours so that we can let as many people know as possible that it is happening.
"Secondly, as individuals or as group, please fundraise in any way that suits you.
"Finally, and most importantly of all, please donate to this appeal online at
https://www.charityextra.com/whenyourworldstops or call our Supporter Care Team on 02920 532 255, between 10am on Sunday November 26 and 10pm Tuesday November 28 to make your donations – and you will see the value of your donation doubled."
A report published by Tŷ Hafan and Tŷ Gobaith Children's Hospices earlier this year showed that 1 in 172 children born in Wales will have a life-shortening condition and that demand is rocketing for services Tŷ Hafan provides which are free of charges to those who need them.
At the same time, the cost-of-living crisis has hit Tŷ Hafan hard with its annual energy bill alone having gone up from £100,000 to £400,000 last year.
About Tŷ Hafan
- Tŷ Hafan is one of two children's hospices in Wales, the other being Tŷ Gobaith in North Wales. The services of both hospices are available throughout Wales and are free to any family that needs them.
- Life-shortened means that the child or young person is not expected to live beyond 18 years old. The average age of a child referred to Tŷ Hafan in the past 12 months is one-year-old.
- Tŷ Hafan has supported 352 children with life-shortening conditions and their families in the past six months, providing specialist palliative care addressing the physical, emotional, social and spiritual needs of each member of the family. From diagnosis to bereavement, Tŷ Hafan is there for the family as long as they need us.
- The majority of Tŷ Hafan's work is about "quality of life" rather than "end of life". It is focused on "making a short life a full life".
- Tŷ Hafan offers families end-of-life care, and services such as family support, complementary therapy, music therapy and outreach play both within the hospice and in the family home.
- A child and his/her family can be referred to Tŷ Hafan at the time of diagnosis with care and support being provided throughout the course of the child's condition, which can be for many years.
- The children and young people who access Tŷ Hafan's services suffer from a broad range of conditions, many with profound and complex medical needs. Some of the conditions are so rare they haven't been named.
- It costs around £5.6 million every year (circa £15,275 a day) to provide Tŷ Hafan's care services to children and young people with life-limiting conditions and their families, at our hospice in Sully (near Cardiff) and in homes and community settings across Wales.
- Around 80% of Tŷ Hafan's care costs are generated by donations from the generous public in Wales and beyond, via a range of fundraising activities - including community and corporate events, legacies, and, its commercial activities such as its lottery and shops. The remainder of Tŷ Hafan's care costs are received via statutory sources in Wales.
- For more information and to make a donation go to www.tyhafan.org
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