A teenager with a rare condition is supporting Tŷ Hafan’s Christmas Appeal to thank them for giving her “freedom and independence”.
Thirteen-year-old Eleri Feenan was born perfectly healthy. But when she was six months old, her parents Keri and Mike noticed she wasn’t moving as she should be and was starting to miss the physical milestones for her age.
After 11 months of constant worry going back and forth to the doctor, the couple were told the devastating news that their beautiful girl had Type 2 Spinal Muscular Atrophy (SMA). Eleri was eighteen months old.
About one in every 10,000 babies are born with SMA – a very rare condition that affects the ability of the spinal cord to send messages to the muscles.
“The consultant told us Eleri would need a wheelchair,” said Keri.
“In addition, Eleri needs help with her breathing and simple things like coughing are potentially life threatening.
“We were heartbroken. How would we ever be strong enough to cope with this?
“The years that followed were hard, challenging, lonely and scary. Eleri was growing up a little more each day, making a life in the world in her own way. SMA is so rare it’s just so unlikely that there will be other families in your area with a child with this condition.”
When Eleri was six years old, the family was told about Tŷ Hafan, but her parents decided it wasn’t the right time to take Eleri to the hospice.
“Now, we know we couldn’t have been more wrong,” said Keri.
“We felt quite alone but we began to realise that Eleri needed to connect with other young people who understood what living with her condition was like. We reached the point where we needed to find more help for Eleri and ourselves.”
After watching a few of Tŷ Hafan’s videos on YouTube, the couple learned more about the different services provided by the charity and how it could give them and Eleri the support they all needed.
“We soon realised it was a place that offered so much more than we had originally believed six years earlier,” said Keri.
“We discovered that there were other families in Wales just like ours. So with Eleri at the age of 12, Tŷ Hafan came into our lives. We were convinced Tŷ Hafan could help and over time Eleri decided she wanted to check the place out.”
Now the whole family say that turning to Tŷ Hafan was the best thing they ever did.
“The moment we stepped through the doors, we relaxed in a way that we hadn’t been able to for 13 years,” said Keri.
“It was our first sense of being part of the Tŷ Hafan family we have come to love. From that instant, the last 13 years of worry and isolation were behind us. We were no longer alone.”
“Since Eleri’s diagnosis, we’ve done all of the caring and looked after her ourselves. We couldn’t believe it when the nurses told us to sit back and relax. It sounds silly, but it was only in that moment that we realised how much we’d been trying to cope with on our own. We soon realised Tŷ Hafan was a place where we could gain more strength.”
As for Eleri, her short break stays at the hospice gives her the independence she craves as a teenager.
“Eleri was quite anxious on her first visit, but the moment she saw her bedroom decorated to her style- marvel comic book design, minions and movies- she was at ease,” said Keri.
“She soon made friends in a similar situation to her and began hanging out in the teenage den playing computer games and that was it, we hardly saw her. She had her freedom and independence and she was grabbing it with both hands.
“This was the first time Eleri had any freedom from us and, as parents, it’s a scary thing watching your teenager become independent from you. But seeing in her eyes how much she needed this, and how happy it made her, is something we can never thank Tŷ Hafan enough for. We stopped being one in 10,000 and we were one of the family.”
Another way in which the charity has supported the family is in encouraging Eleri to live the best life possible and following her dreams of becoming a journalist.
“The team set up an opportunity for Eleri to do a video interview with two ice hockey stars, which she then published on YouTube and wrote about on her blog. To see her proud of something she’s worked on made our hearts full to burst!” said Keri.
This Christmas, the family are encouraging the public to support the charity by making a donation.
“Without Tŷ Hafan, we would be lost. We know there are many, many families in Wales who are coping on their own and, like us, are exhausted. Care and support from Tŷ Hafan will change their lives for the better,” said Keri.
“If you’re able to make a donation this Christmas, please do. It will make all the difference.”
To make a donation to Tŷ Hafan, please visit the website www.tyhafan.org/eleri or call 029 2053 2199.