Noah’s Ark Children’s Hospice is so much more than a service, they are literally a lifeline to us. We say this because we are one of the families they have supported and still continue to do so.
To us they are family; there are no words to express how much they mean to us.
Our son Kayen was born in April 2011. As first-time parents, we were so excited and ready to start a new chapter in our life. If only we knew our smiles would turn to tears. At three weeks old, Kayen was diagnosed with a rare condition, Mucolipidosis II. The condition is very complex and had a massive impact on his health and development, with a life expectancy of a few years. This shattered us and we couldn’t get our heads around any of it and we still haven’t.
We had no idea how we were going to cope, and within a short time, we were referred to Noah’s Ark. At first, we were so scared about being referred to a hospice but within no time our fear was gone. Everyone was friendly, caring and completely understood all of our needs.
Kayen’s diagnosis wasn’t good and we had no idea how things would be. We just wanted him to have a happy, fun-filled life and for him to be able to do normal things. That’s what we were able to give him with the help and support from the team at Noah’s Ark.
Kayen had lots of fun at family days and was excited to be around other children. He very much enjoyed getting involved with all the activities. It was nice for us as a family to do things together and just to have a few hours to forget all the horrible dark stuff.
Meeting other families was comforting, as being in a situation like ours can be very isolating and lonely.
It was helpful to have respite care for Kayen at home. It allowed Kayen to be independent and had a big impact on his development. One of my fondest memories was coming home and finding Noah’s Ark’s Tony playing in the ball pit with Kayen. Our home was filled with laughter on many occasions, but there were also times when Kayen needed comforting and Tony knew exactly what to do. They had a special bond.
Kayen passed away suddenly on 30 Dec 2013; this was shocking as he had been doing so well. Everything just fell apart. Our support network and the medical teams we had around us seemed to vanish overnight. My biggest fear was Noah’s Ark leaving us when we needed them the most.
The continuing care has been amazing. I cannot imagine our life without them. They were a big part of Kayen’s life and that’s why they are like family to us.
Without Noah’s Ark, things could have been a lot worse. Noah’s Ark is vital and there are many more families out there that need the support. Having a hospice facility is very important. Without a doubt, a home from home environment would have made a big difference to Kayen and us.
We never dreamt we would embark on a journey that would be this painful and heartbreaking. It’s tested us mentally, physically and emotionally, the help and support from the team have been invaluable to us and for this, we are eternally grateful.
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