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On 9th May 2011 we were blessed with a new addition to our family when my sister and husband had their 2nd child Owen.

Sadly this beautiful boy was born with a rare genetic disorder called LEOPARD Syndrome meaning he was profoundly deaf and had a very serious heart condition, hypertrophic obstructive cardiomyopathy.

At the beginning, apart from many hospital appointments, he led a very normal life. He fitted right in to the family and stole our hearts with his coy smile and beautiful blue eyes. He was never demanding and was a joy to be around.

In January 2012, he suffered a sudden cardiac arrest at home and on 15 April he passed away leaving a gaping hole in our lives. After his first cardiac arrest he spent time in our local hospital and then at Brompton and Evelina in London where he had many operations and procedures.

CHASE Children's Hospice has been an incredible part of our journey with Owen. My sister's family first went to CHASE at the end of Februrary after they had taken Owen home from the Evelina hospital for two weeks. When they left Evelina we barely expected Owen to survive the journey home. They looked after Owen at home and it was hard. Really hard.

After 2 weeks they were utterly exhausted, physically, mentally and above all, emotionally. So they packed up and went to CHASE for 2 nights respite... they decided to stay on for the weekend... they ended up staying for 8 weeks!

The team at CHASE were incredible. They took on a lot of the jobs that needed doing but allowed them to still look after Owen themselves, and they allowed them to look after Theo, to be mummy and daddy again and to have time for cuddles with both of the boys. They looked after us all, nothing was too much bother and the staff there have become like family to them. The most amazing thing was that as a family they could all stay together at the hospice.

They had the best of both worlds, a family, home-like environment but with the care and support for Owen's complex needs. The medical care was second to none and everybody understood what Owen needed at the end of his life and also what we as a family needed. They gave us time to talk, to have privacy and to enjoy our family at a time when it seemed there could be no enjoyment left. They helped us to create special memories and mementoes.

We will be forever indebted to CHASE and I know this won't be the end of our journey with them.

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