Children's Hospice Week - Lee Gawne

This Children’s Hospice Week we want to share with you a story from Katie, whose son Lee Gawne was a well-loved and cherished member of the Rebecca House family;

“Lee was born September 2005, he was a perfect bundle of joy. Our first born. He was doing what babies do until he just wasn’t hitting milestones as in sitting or talking so he was referred to paediatrics where he was diagnosed with Cerebral Palsy but a few months later after more tests it was confirmed Lee had a rare genetic condition called Aicardi Goutieres syndrome. This condition effects his brain where a calcification blocks signals to his brain. He also suffered with dystonia, epilepsy, psoriasis to name a few but Lee was a little soldier. He went everyday smiling making you smile. He was just a very happy boy despite this condition. It was tough and difficult and we had some bad times but Lee being Lee defied the odds every time something arose. He really was the strongest person we knew.

Rebecca house came into our lives when Lee was a little over 2yrs old. When we were told about Lee going to hospice it was hard to hear. Because naturally being told hospice you think this is it, this is the end but how wrong was I.

Rebecca house was and still is a home from home for all of us. Lee adored going. It was respite which at the time was needed after losing a support system at home when his nana passed and they just welcomed us with open arms and we’ve never looked backed. Lee had day care and overnight care which he loved. They also had sibling days and parents nights which were brilliant. Counselling and complimentary therapy has also been accessed too.

End of life for Lee was a hard time for us to come to terms with. We never wanted the hospital to be the last thing he saw. We wanted him home and to us home was at Rebecca House.

To be surrounded by people who loved, cared and supported for us as a whole. We stayed in the apartment above Rebecca House so we were never far from Lee so we could freshen up or sleep. They were amazing to help with even talking to Lee’s little brother with us telling him about end of life. They helped with getting Lee christened. They were just amazing. They cared for us too. Shoulders for us to cry on. Hugs to keep you up when your world collapses. Every emotion they are there. The rainbow room was peaceful and private to spend them last moments with our boy. We can’t say thank you enough for everything you have done for us over the last 16/17 years. Rebecca house are angels in our eyes. We would have been lost without them.