When asked what’s their favourite thing about coming to Hummingbird House, Kyran Dunlop’s mum Carissa laughs and says “there’s too many! We get time out as a family. Kyran’s sisters love it here. It’s like being on holidays. We get time together without having to remember when medications are due, and Kyran is really happy to be here.”

Kyran

Kyran has a rare disease which results in progressive damage to his nervous system. This means that he often has his eyes closed. “At first, I was annoyed and hurt when people commented on how lucky he was to be asleep. Now I just say ‘yes’. If it means that makes him like everyone else, then I’m going to go with it.”

Kyran recently celebrated his first birthday. “I was so scared with every milestone he hit. However the staff at Hummingbird House really made it easy. They allow us to make so many memories.”

Carissa has her own favourite part of being at Hummingbird House. “We (other families) bonded over Married at First Sight. We knew that we could take this time to be us, and meet in the lounge room, watch television and laugh a lot. We could only do this because we knew the kids were being so well cared for. We became our own version of gogglebox. It gave us a break from our everyday. I loved it!”

Hummingbird House offers Kyran and his family a chance to learn from other families too. How to care for a child with complex care needs, how to advocate, and how to navigate the changes Kyran’s condition has brought. “We are so lucky to have Hummingbird House in our lives. We don’t take it for granted. It will be a part of us for the rest of our lives. It’s a place of life, not death. It’s safe.”

When Kyran was diagnosed, Carissa and her family took some time to ask ‘why’. “I often found myself asking ‘what’s the reason for this?’ I now know the reason is so we can meet the team at Hummingbird House, meet other families, for us to help advocate for Hummingbird House. Hummingbird House will be our second home until the time comes, and long after that too.”

Kyran is a mummy’s boy, which is blessing and a curse for Carissa. “As we spend more time at Hummingbird House, and Kyran has settled with his medications, he is getting to know there are a lot of people here to care for him. That means we have other eyes on him, letting me know what I’m seeing is real, or gently pointing out what I’m missing.”

Carissa describes her boy as a “beautiful, gentle soul. He has a sense of humour, and loves kisses from mummy. He loves and adores his family. To me, he is perfect. He has changed the way I see disability in the community.”

When asked what matters most, Carissa replies “family. They are the world you created that involves love and unity. They will be there for you before, during and after Kyran’s journey. Family can be chosen or created. People come and go through the various stages. Catastrophes can happen to you, but the end of a life should not be seen as something to fear. Because of the support I and my family has received here at Hummingbird House, I know I have to get the word out that Hummingbird House is vital to families like mine. The people I’ve met and the team here have become like family to me. I don’t know what I would do without them.”