In January 2018, out family was hit by a massive blow when my cousin’s son, Thomas was diagnosed with a rare condition called Adrenoleukodystrophy or Cerebal ALD. Along with his family, Thomas was introduced to Tŷ Hafan where they were offered so much support, care and love.
Thomas quickly changed from a cheeky, active little boy to being totally dependent on around the clock care. Thomas received regular respite, with Jamie, Sarah and Ella being able to go and also stay with him at Tŷ Hafan. This allowed them the time to spend the time together as a family.
I visited Tŷ Hafan in July 2018, I visited Tŷ Hafan whilst Thomas was staying there. I was hit by the enthusiasm, positivity and care as I entered the building. Everyone was so welcoming and reassuring. There were so many personal touches around the building that will stay with me; the handprints on the wall, personalised bedrooms for the children staying. Ella, Thomas’s younger sister was able to have such freedom whilst she was here and was also able to attend the sibling support groups.
As Tŷ Hafan became such an important place to our family, some family members engaged in the Ride to the Rugby to raise money and much needed funds for Tŷ Hafan. I have helped organise several events to support which has included a quiz night, afternoon tea and race night.
Sadly Thomas lost his fight with the condition in June 2019. Thankfully he spent the last but precious moments of his life at Tŷ Hafan.
As a family we are so thankful to Tŷ Hafan and this is another reason why I took part in ‘Marathon in May’. I personally found the prospect of ‘lockdown’ difficult, but the challenge kept me going and pushed me to get out and walk. The stunning weather and amazing countryside whilst living so rurally has also helped a lot!
I knew it wouldn’t be easy, but with the support of my family and friends I have kept going. It has also helped me to reflect on the challenges Thomas faced but never gave up. With the help and support he had from Tŷ Hafan he certainly didn’t do this without a fight.