When Ben and Lee became first time parents, they never expected to need Bear Cottage. Now they couldn't imagine life without it.
Ben and Lee's twins, Kira and Mia, were separated just two days after birth. Kira then spent the next few months under the care of the Grace Centre for Neonatal Intensive Care at The Children’s Hospital at Westmead (CHW).
Kira, now eight years old, was diagnosed with KCNQ2 Encephalopathy, a rare form of epilepsy that typically presents in the first week of life. She is one of less than 1000 children who have the condition worldwide.
In her first few months of life, Kira was having more than 20 seizures a day before neurologists were able to identify an anti-epileptic medication to keep them under control.
“When Kira was in the Grace Centre, Lee and I had to divide and conquer. There was always one of us in the hospital and the other at home with Mia. As we were first time parents, just having kids at all was a challenge,” said Ben, Kira’s dad.
“Once we had a diagnosis at nine months, we began to try to implement a routine to our lives.”
With KCNQ2 Encephalopathy comes global development delay, which is when children are significantly delayed in their cognitive and physical development. As Kira has severe delays; she will be like a nine-month-old for life.
Kira also has further complications with dystonia (a neurological movement disorder), hypertonia (too much muscle tone), sensory processing disorder (a condition affecting the brain's ability to receive and respond to sensory information) and cortical visual impairment.
Between all the medical appointments, finding the right balance was difficult for the family.
“Family time is pretty limited, even with carer support,” Ben said.
“Trying to make sure Mia gets quality family time is always on our minds. It also means we have next to no time for date nights as parents, given we can’t just call a babysitter and go out.”
Bear Cottage now plays an important role in their family life.
Kira had her first stay at Bear Cottage in 2019 and has since been a regular visitor. A happy and positive girl, she has the ability to make others happy with her infectious smiles and giggles.
Ben said the help of Bear Cottage has improved the mental health of the family and allowed Mia to just be a kid too. Knowing that they can enjoy time together as a family at Bear Cottage or feel comfortable taking time out for a holiday with Kira safe in the care of its wonderful team, has brought the family closer together.
“The amazing team of trained professionals are so well organised, and we always feel we can let go knowing that Kira is in good hands. They are all lovely people who genuinely care about their patients and families, and that is true whether it’s the nurses, housekeeping staff, the chefs, or the management team. They all know Kira so well!” Ben said.
“Kira’s sister Mia also really likes Bear Cottage and there is always plenty to do for her as well. From the craft tables and games room, to making friends with other siblings of kids staying onsite, Mia always likes to visit.
“The other benefit has been getting to know some of the other parents who stay at Bear Cottage, there is a real sense of community. Just knowing that you are not alone certainly helps and no matter who you talk to, there is always respect.
“Bear Cottage has changed our lives and we can’t thank them enough for all that they do for us!”
This year’s theme for National Palliative Care Week (21-27 May), ‘'Matters of Life and Death' seeks to encourage and start important conversations about palliative care.
The awareness week is also an opportunity to share the stories of our palliative care teams and showcase the difference they make to children, like Kira, with life limiting conditions and their families.