We lost our beloved son & nephew Luca a few short weeks before Christmas 2017 and just after his eleventh birthday.  He had been diagnosed with a very rare and life-limiting condition, ROHHAD Syndrome, at two years old.  Luca spent the remaining years of his short life in and out of hospital.  We tried to live as normal a life as possible, and this was made possible through the support we received from various sources including Ty Hafan. 

It was very obvious to anyone who had any dealings with Luca that he was an exceptional person. He had a tremendous zest for life, a determined will, and a mischievous sense of humour, and that’s why we must celebrate his life, everything about it that made it special, and everything about Luca that made him a wonderful person to know. Through necessity, we learned to share Luca with many other people - carers, nurses, doctors, teachers, charities including Ty Hafan. They all became part of Luca's 'extended family’. 

Luca always went out of his way to help others.  To honour his spirit of generosity we chose to donate Luca's organs. Luca always lived life as it should be lived – he seized each opportunity that life presented with both hands and squeezed every drop out of it. He wanted to meet everyone and experience everything. Life is a gift – we honour Luca’s memory and enjoy every moment as Luca did. Luca made the impossible possible - he survived against all odds for as long as he did and achieved so much, his strong will to succeed proves that anything is possible if you want it enough. 

A few months ago with the help of Ty Hafan and the Royal Welsh Fusiliers we took Luca to the top of Penyfan.  It was a tremendous achievement for him and a moment to treasure forever.

Now, we have the challenge of the 5 peaks.  (12 dads, 3 uncle's will complete the challenge).  Myself and my 2 brothers (Luca's Uncle's Dan & Marco will be part of the group).  We know that Luca will be with us in spirit , cheering us on every step of the way. Climbing a mountain was what Luca's daily battles were, and we know that many other Ty Hafan families climb their own mountains on a daily basis. Ty Hafan are the there at our 'pitstops', recharging us and encouraging us to go on when we stumble and fall. 

This is an opportunity to say thanks to Ty Hafan for all of the years of support and to raise further awareness for the charity to continue its tremendous work.  Our support will continue with the siblings and Mum's and Dad's groups.

We would be very grateful if you could support us.

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