Ty Hafan

ty hafan refurbishment appeal

Tom's story

Tom and Family

My son Tom and I first visited Tŷ Hafan back in 2003 when he was nine years old. Tom is now 26 (years old) and is doing amazingly considering all he has been through.

I have to say Tŷ Hafan became a massive life-line for us as a family. Although we were nervous on our first visit, there was absolutely nothing to be scared about; it was like walking into a cosy living room filled with family and friends.

Tom’s last stay at Tŷ Hafan was on this 19th Birthday, but Tŷ Hafan is still very much an extension of our family and we are now part of The Squad.

Tŷ Hafan means everything to us.

Tomas was diagnosed at six weeks old with hydrocephalus (water on the brain), and at just eight weeks he was fitted with a (Ventricular Perineum) shunt. To date Tom has needed 9 replacement shunts fitted.

At around 18 months old Tomas began to have strange episodes of unexplained crying, these episodes became longer and more frequent. After many hospital appointments, Tomas was finally diagnosed by a Neurological Consultant at Great Ormond Street Hospital with a condition called Dystonia.

This condition causes the muscles in his body to contract and form unusual postures. These constant muscle contractions have caused Tomas to have skeletal problems, meaning more operations.

Tom and Sophie

But Tom is pretty incredible and doesn’t let his condition stop him from doing anything.

Tom has thrown himself into what he loves the most, sport. He is now studying Sports, Development and Coaching at University. He has also achieved many awards by becoming Welsh National Boccia Champion and hopes to become a coach in the future. We couldn’t be more proud of him.

We try to give Tom a full life and Tŷ Hafan makes this so much easier for us. Tom’s main group of friends are those he has made at Tŷ Hafan and in The Squad. For us as parents, we can see how much Tom gets from The Squad, he is a young man with a great sense of humour and the desire to try as many different things as he can. Seeing him with his mates makes us so happy.

Tom is particularly looking forward to the completion of the new Transition Suite, known to all as The Den, as it will give him some independence and a place for him to learn new skills for the future. It will also allow him and his friends to meet when it is finally safe to do so once restrictions are lifted during these strange and difficult times. It will be great for them to get together without it being so daunting as some of his friends haven’t been outside since March when the pandemic started.

Some of the friends Tom made at Tŷ Hafan have sadly passed away, but the staff are always there for him at these difficult times.

Tomas is a remarkable character and an extremely bright young man, and Tŷ Hafan has played a massive part in his life. I can never find the right words to express my gratitude for all the help and advice Tŷ Hafan has given to us over the years.

It has been a difficult but happy journey and our Tŷ Hafan family has always been there.

I would like to say thank you from the bottom of our hearts for supporting Tŷ Hafan and families like mine.

Deb, Phil and Tom x

Tom's Story