Hummingbird House is Queensland’s only children’s hospice, supporting children with life-limiting conditions. We are committed to providing a Queensland-wide service, and helping families no matter where they live.
This summer, we are asking for your help to support children and families in regional Queensland. We currently care for families from areas such as: Cairns, Townsville, and Mackay.
Like beautiful baby Florence, who lives in Gladstone with her parents Ellie and Brett, and big brother Leo.
In-home care and support are not an option where Florence lives. Ellie and Brett are the only people in their town with the skills to care for her. This can often feel very isolating. Ellie says “Hummingbird House is the only place we can go for a break and time out, altogether as a family”. Ellie has shared how Hummingbird House is helping her family. Please read, and see how your support can make a difference for regional families. All donations will help families like Florence’s.
Can you introduce us to Florence?
Florence is a beautiful baby girl who is always happy and full of wonderment. She was born with a rare neurological disorder which paralyses all the muscles surrounding her mouth and throat. She also has condition called arthrogryposis, which means every joint in her body is contracted.
There's a very high chance that Florence will never be able to breathe on her own, eat food, talk or walk. But she is growing and meeting her own milestones in her own way. She is really social, loves being around people, and of course getting attention. In many ways she is an ordinary little one year old.
The hardest part about Florence's condition is not knowing how long she will be with us. We are coming up to her first birthday and second Christmas and it is bittersweet because while there is so much to celebrate, we know it could be her last. We've had to learn to enjoy the moments and days that are gifted to us.
What does staying at Hummingbird House mean to your family?
We can spend time enjoying each other's company without the everyday pressures that can often overwhelm our lives. At home Florence requires 24hour care. The best way to describe her care is endless! Brett and I often find ourselves acting as nurses and carers before parents. Things that most families take for granted, movie nights or outings to the park, feel like a thing of the past for us. They sound like simple things but I can't emphasise how special it is for our family to find quality time together.
What’s Florence’s favourite part of visiting Hummingbird House?
Florence loves the attention she gets from the staff. They're more than just carers for her physical needs. There is a real sense of joy in the care they provide. When you have a child with a life limiting condition it is rare to come across people who see past the condition to the little human being behind it. Florence has all the same needs as other children: care, love, attention, play.
There are also a lot of services at Hummingbird House that Florence can't access in Gladstone, like music therapy, art therapy and hydrotherapy, which just adds to her experience. She LOVES music therapy!
What’s your favourite part?
I love the meal times. It's not because someone else is doing the cooking (although that is brilliant), it's because we all sit together with everyone, and it has a strong community feel.
During our last stay Leo and Florence both did art therapy together and he talks about that a lot. The staff are great at making Leo feel like the amazing big brother he is.
Do you have a particularly special memory from Hummingbird House?
When we all made artwork with our hand prints was really special. We got to take the beautiful prints home, to have that with us forever.
How is the support you receive at Hummingbird House different from the services at home?
Living regionally can be very challenging for families like ours. Basic medical and allied health services are available but all other kinds of support, including respite, are non-existent. It's hard not to feel totally alone sometimes. I can't even imagine how much more isolating it would be if we didn't have Hummingbird House.
What would you say to someone thinking about donating?
It's hard to explain just what it means to have Hummingbird House to support our family. It's like a warm hug that says "we are here with you on this journey and we get it". I don't think it's possible to put a price on that.