Willow Matthews and her family were referred to Tŷ Hafan in 2012. Her mum, Kelly, has written about her experiences and how Tŷ Hafan has made a difference to their lives.
Kelly, a Family Ambassador for Tŷ Hafan, has set up her own fundraising group and is looking for volunteers to meet at least once a month to help raise money towards a 2015 summer festival she is organising in aid of Tŷ Hafan.
If you would like more information, please contact Kelly by emailing firstname.lastname@example.org or call 07414 614197. In the meantime, please take a moment to read her touching words:
Willow was born in November 2012 with abnormal brain scans, a fixed jaw and other problems. Her birth defect meant she would need ventilation 24 hours a day, seven days a week via a tracheostomy.
At first, myself and my husband didn’t realise how serious it was. We thought she would be in hospital for a couple of weeks and get better. We began caring for Willow all day, every day in the neonatal unit before the realisation that this was long-term, and that we would need help at home.
When Willow was four weeks old, a doctor asked us if we wanted to knock her ventilator off as she would have no quality of life – she could just drift away in her sleep.
Me and Damien refused. We were adamant that we would give Willow a quality of life, no matter what it took. So weeks went by, when one day we were told we had been referred to Tŷ Hafan.
What is Tŷ Hafan? Why did we need referring to a hospice? Did they think Willow was dying?
We met Sara who explained all about Tŷ Hafan. Although reserved, I was willing to see what Tŷ Hafan was and agreed to go for a little stay. My husband however, didn’t like the idea. He couldn’t get out of his head that a hospice is somewhere you go to die.
How wrong we were. The ideas and thoughts of Tŷ Hafan before going were completely different to the reality of Tŷ Hafan.
Tŷ Hafan has opened our eyes. They have given us strength and hope to help fulfil our daughter’s life. They are there for us day and night, whenever we need them.
Willow’s first stay in September 2012 changed our lives completely, we weren’t alone and they became part of our family. They have helped Willow to develop in ways that doctors never thought possible.
When she spends time at the hospice, they are like angels. They give Willow all the time in the world. They care for her as well as me and Damien would at home, and allow us the opportunity to have a short-break away from our busy and stressful lives.
They give us the chance to live in our own home, without nurses being there six nights a week. For that short while, we are Damien and Kelly, and we are able to recharge our batteries for the next few months ahead so we can be the best that Willow needs and deserves.
Willow is also lucky to have outreach play from Jane at Tŷ Hafan, and we are also supported by Hayley Mason, who from time-to-time listens to me vent – poor Hayley!
And if Willow was to reach end-of-life too early, I know, from the bottom of my heart and the back of my mind, that she would take her final breaths in the comfort and care of the hospice - where the staff have always treated Willow as one of their own.
Tŷ Hafan, to some people may be just another charity, but to those of you who understand and care, Tŷ Hafan is a lifeline for families who need them. They are stars in the night sky.