When little Thomas Williams was born, his parents Lucy and Paul and big sister, Emily were delighted to welcome the new addition to their family.
Everything seemed fine, but the next morning, Lucy noticed a rash on her baby's face and hands.
The infant had an infection and was rushed to the neonatal unit where medics noticed that Thomas' head was small.
He was just 11 days old when he was diagnosed with a life-threatening brain condition that limits his mobility and movement.
It was a moment that changed the family's lives forever.
Never able to walk, talk or even support his own head, the family took Thomas home, not sure what the future had in store.
But he continued to surprise them and now they want to raise awareness of the children's hospice that supported them and helped make their lives easier.
Thomas, from Tyn-y-Gongl on Anglesey is now seven years old, he needs to be fully supported in a wheelchair, struggles to see properly, is fed through a tube and his communication is limited to crying and laughing.
But it's his laugh that makes everything worthwhile.
Lucy, who had to give up her career as a solicitor to care for Thomas, said: "Soon after Thomas was born, he developed infection and while he was on the neonatal unit, they measured his head and noticed it was small and out of proportion to his body.
"After tests, he was diagnosed with polymicrogyria and microcephaly, which we'd never heard of at the time.
"We just knew it would have an impact on his development.
"He had other connected problems too but after three weeks, we took him home, not knowing what to expect as they couldn't tell us how severe his condition would be.
"The only difference between him and his sister when he was such a small baby was that he had trouble sleeping because of reflux.
"He was breast and bottle fed and moved onto solids.
"He was 18 months old that he was fitted with a tube."
As Lucy and Paul cared for their baby, they were encouraged to think about getting support from a children’s hospice.
"We were reluctant because we were afraid to see what his future may hold," admitted Lucy.
"It wasn't until Thomas was one that we decided to take him.
"We needed support and a break so we could recharge our batteries and the opportunity to spend some quality time with our daughter, Emily.
"We also wanted Thomas to be able to interact and have fun with other children."
She added: "When we came to Ty Gobaith Children’s Hospice, we were so glad we did.
"It wasn't what we thought it would be, it was better and it felt right."
Since then, Thomas has been going to Ty Gobaith for respite care.
Often, Lucy, Paul and Emily will stay with him.
Emily gets the chance to spend time and have fun with Thomas, and other brothers and sisters who understand what it is like to live with a sibling with a life-threatening condition.
Lucy and Paul can take the opportunity to relax and recharge. They don’t need to worry about Thomas, the nurses are there to look after all his medical needs so they can concentrate on spending precious time together and making special memories.
Lucy, who wanted to speak out to raise awareness of Ty Gobaith, added: "Thomas is a happy little boy who smiles and laughs all the time.
"He loves being surrounded by people, going on trips out on the minibus and having fun in the playroom.
"But, his favourite activity is the Eye Gaze, a special computer which enables him to communicate and interact, just using his eyes.
"We all work tirelessly to look after him and coming to Ty Gobaith gives us a chance to switch off from being full time carers and focus on being a family."
For more information on the hospice visit here
