Spring is here and, as we see the first Spring flowers bloom and we think about enjoying the warmer weather with our loved ones, Rebecca and Barry would like to tell you about their inspirational daughter Alice, who at just eight years old has already overcome enormous challenges in her short life.
Can you help families like Alice’s enjoy special moments together and not miss out on the simple things that other families take for granted?
Please consider making a donation to Tŷ Hafan. With your help, we can provide much-needed care, support, and respite to more families, allowing them to enjoy precious moments together.
Please donate today and help ensure that we will always be there for families like Alice’s.
Your donation will mean so much to the families who turn to us for help, and it will help us continue to provide the care and support that they need. With your support, we can make a real difference in the lives of children and families in Wales. Thank You.
“Alice has a life-shortening condition called Goldenhar syndrome, a rare congenital condition, that causes the abnormal development of facial features.
“She suffers from other long-term complications of Goldenhar syndrome, including sight, hearing, and respiratory issues, and was born with a cleft lip and palate, and multiple skin tags. Alice also has hemifacial microsomia with left sided mandibular deficiency.
“We found out that Alice had Goldenhar syndrome when she was seven months old. We knew from our 20-week scan that something was seriously wrong.
There were several concerns, however, a skin tag on her nose was a major concern when we had the scan. At the time they could not confirm if it were a skin tag or the possibility her brain was coming through.
“When Alice came into the world, she took her first breath and cried.
“Shock and relief overcame us.
“But moments later, her health deteriorated, and we were told to prepare for the worst.”
Alice was rushed to the Neonatal Intensive Care Unit just 20 minutes after she was born by C-section because Barry and Rebecca were told she was likely to die.
“We were told before Alice was born that her mouth might not have developed properly. That meant there would be difficulty intubating her and she would need an emergency tracheostomy. Within a few minutes of her birth, a tracheostomy was placed.
“Alice has the rarest type of Goldenhar syndrome, which means her lungs are affected. She was born with two collapsed lungs and part of her lung was removed when she was five months old. She was very, very poorly.
“When she was born, doctors had difficulty detecting brain activity as she was born prematurely at 34 weeks. We were told if she were to make it, she could have further complications of cerebral palsy.
Please help make every moment count for families across Wales.
Clinical Nurse Specialist
Could pay for a Clinical Nurse Specialist to visit a newly referred family providing reassurance that Tŷ Hafan and the hospice will be there to support the whole family.
Play worker support
Could pay for one of our play workers to spend the afternoon with a child using the specialist playground in our gardens.
Emotional Support for siblings
Could pay for our family support practitioners to provide emotional support for siblings, both individually and as part of our sibling group Supersibs.
Emotional Support for the family
Could pay for four hours of emotional support from a family support worker, helping families to deal with the daily challenges they face.
“She proved everyone wrong.
“Alice was referred to Tŷ Hafan so that we and our eldest daughter, Scarlett, could be supported as a family.
“Alice and Scarlett bounce off each other. We call them Tom and Jerry! And when Scarlett really winds Alice up, we call Alice ‘Scrappy Doo’!
“We miss out on things that other families can take for granted.
“After what happened to Alice when she was a baby, we really struggle as a family with going to hospital appointments, but she is going to have constant operations and appointments for her whole life.
“Sarah, the Play Specialist at Tŷ Hafan, comes to major hospital appointments with us for support, like when Alice is having her tracheotomy upsized or having her jaw rebuilt.
“Scarlett is ten years old and really feels the weight of her sister’s health complications. It is easy to forget how much siblings are affected by these challenges, but the impact is profound.
“Without Tŷ Hafan, our whole family would massively struggle.
“Scarlett really struggles with how Alice’s condition affects us as a family. She does have to miss things, and she was especially affected during the lockdowns when we all had to shield.
“Scarlett has been given play therapy with Anna at Tŷ Hafan, and she goes to the Supersibs group so that she can connect with other children who are facing similar challenges.
“When Alice was a baby, all four of us would stay at the hospice. Now that the girls are older, Alice is confident enough to stay at Tŷ Hafan by herself, which means we can have more quality time with Scarlett.
“We get to have a break and not worry. We trust the Care Team at the hospice, so we are happy to leave Alice with them. During one of Alice’s stays at Tŷ Hafan, we were able to take Scarlett to Comic Con!
“The doctors see Alice now and don’t believe it’s the same child.
“We are all amazed by Alice. She is our little fighter. Tŷ Hafan has had a massive impact on our family, especially Sarah and the Supersibs group for Scarlett.
“Simply put, Tŷ Hafan provides us with the sort of life opportunities we would not otherwise have had.
“Thank you for reading our story, we know that times are harder for many of us this year, but we know that whatever you can give will make an enormous difference to families like ours.”
Rebecca and Barry
We’re so grateful for all donations. They each add up to help us fulfil our mission of making a short life a full life!