When time is limited, every moment matters.
Every year, hundreds of South Australian parents are given the devastating news that they have limited time left with their children. Bobby and Kiera Lovett have been given this news not once, but twice.
In 2018, after multiple tests, scans, and specialist appointments their youngest son, Declan, who was three at the time was diagnosed with leukodystrophy, an incurable neurological disorder that affects the central nervous system.
Just months after Declan’s heartbreaking diagnosis, genetic testing revealed Connor has the same leukodystrophy as his younger brother, while younger sister Evie-Lee was cleared. Both boys are now under the care of the Women’s and Children’s Hospital Palliative Care Service.
“Someone asked me recently how I stay so strong, but the truth is I don’t have strength. I cry everyday. Connor and Declan deserve so much in life; they don’t deserve to go through this”, says Kiera.
Please take a moment to watch the Lovett’s story.
A message from Connor and Declan’s mum, Kiera.
Following the devasting diagnosis our sons, Declan and Connor, have leukodystrophy, a life limiting illness, Bobby and I made the decision to move our family of five from Port Lincoln to Adelaide to be closer to the Women’s and Children’s Hospital. Port Lincoln will always be home for us, but we needed to do what was best for our boys.
Image L-R: Connor (7), Declan (5) and sister, Evie-Lee (3).
The boys are cared for by the Palliative Care Service at the Women’s and Children’s Hospital. Without the support and love from the Hospital and the doctors and nurses being right beside us saying ‘we’re here to help’, I don’t think we would cope. The doctors and nurses aren’t just specialists to us, they’re like our family now.
Connor and Declan deserve so much in life, they don’t deserve to go through this. Connor doesn’t say much but he is aware of the health battles he and his brother face, especially now that Declan needs to use a wheelchair.
Image L-R: Bobby, Kiera, Connor and Declan.
For me, the most important thing in my life is our kids and us as a family. It breaks my heart thinking about life without our beautiful boys. I think for us as parents, just hearing the kids laugh and knowing they’re happy is a big highlight for our day. If we’re able to make memories and we’re hearing their giggles, that’s all that matters to us. As a family, when time is limited, we really do have to live for every moment.
Family stays at the ‘Laklinyeri’ Beach House
Taking a family holiday is not an easy undertaking when your children is in palliative care or has complex medical needs. However, their wish to holiday as a family and create treasured memories in the limited years they have together is why our ‘Laklinyeri’ Beach House was built. The House was specifically designed, constructed, and medically equipped to meet the needs of the very special families who stay, while the bright and beautiful interiors, landscaping and sweeping views of the lake create a sense of calm and wellness.
Equipment keeping children at home
Your support funds medical equipment to meet the needs of children in every stage of their journey both in and outside of the Hospital’s walls. Being able to take home vital medical equipment enables a child to spend more time in their own familiar home environment and keeps families together. The opportunity to borrow this equipment relieves financial burden for families who would otherwise need to purchase the equipment.
Play and art therapy sessions
Across all corners of the Women’s and Children’s Hospital, the WCH Foundation proudly funds creative therapy programs. Whether a child is in hospital for day surgery, an appointment in the outpatient department, or if hospital becomes home, play therapy is a critical program that reduces the stress and anxiety they may feel. By engaging in art therapy processes, patients and siblings can explore, understand, and unpack their feelings. Art provides an outlet for the children to explore their emotions and help communicate thoughts and feelings, which are sometimes difficult to talk about.
Short-term financial support
Each year the WCH Foundation’s Family Support Fund provides tens of thousands of dollars in short-term financial support to families that are experiencing financial crisis because of their child’s medical condition. The Fund helps to cover the costs of transport and accommodation related to their child’s hospitalisation, as well as utility bills and maintenance of medical equipment to use at home.
Medical research
The WCH Foundation invests over $1.5 million each year in South Australia’s best and brightest medical researchers to drive better health outcomes for children and ensure the Women’s and Children’s Hospital retains leaders in specialised paediatric and maternal medicine. To enable research of both rare and common medical conditions, the Foundation supports several PhD, Post-Doctoral and Fellowship research positions, as well as international travel grants and specific purpose research and project grants.
