Ty Hafan

family stories - Rhys

alyssia's story

When Alyssia was four months old, her mum, Danielle, noticed she wasn’t developing like other babies her age.


After a number of tests, Alyssia was diagnosed with Schizencephaly – a rare developmental brain disorder.

At almost four years old, she is unable to walk or talk but brings a lot of joy to her family with her beautiful smile and cheery character. 

Danielle said she takes ever day as it comes and concentrates on making the most of every moment with her daughter. 

Alyssia

She said: “I sometimes wonder why us? Why me? But we’ve just got to get on with it. I am just so grateful that we aren’t alone as Tŷ Hafan is there to support us.”

Alyssia’s condition requires round-the-clock care which is why Tŷ Hafan’s support is so vital for her family, especially the short-break care that they receive at the hospice.

Danielle said: “Having time to relax at Tŷ Hafan is invaluable. I very rarely have a good night’s sleep so it’s great to catch up on some rest when we’re there.

“Last time, Alyssia stayed on her own. It was really difficult to leave her but the team at Tŷ Hafan are incredible and I know she’ll be well looked after. 

“It is a little holiday for her as well as for me. They all fight over her when she’s there and she is able to experience things that she can’t do anywhere else. She absolutely loves the hydrotherapy pool and the sensory room.” 

family stories - alyssia

Alyssia has also been diagnosed with global development delay, epilepsy, visual impairment and a chromosome abnormality. 

Danielle said: “It’s an amazing charity and I would encourage as many people to show their support as possible so they can help more families like ours.

"It’s an amazing charity and I would encourage as many people to show their support as possible so they can help more families like ours."

Tŷ Hafan takes its support to wherever it is needed: at home,  at school or in hospital. We do this completely free of charge  for families in Wales that need us. Please help us continue to be there for life-limited children and their families, so they can make the most of the precious time they have left together. 

Download a PDF copy of Alyssia's Story here

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