Samantha and Nathan's "angel-child’’ Cooper appears like any healthy nine-year-old. He loves playing Lego, gaming and to be surrounded by people. But behind his smile and laughter, is a very sick little boy with a rare genetic mutation that only four people share in the world.
For Cooper, his genetic mutation has caused a life-limiting condition called pulmonary hypertension - a disease that makes it harder for your lungs to receive blood from the heart and oxygen.
Unlike other genetic conditions like cystic fibrosis or spinal muscular atrophy that are picked up during a newborn screening test, there were no signs Cooper was unwell until he was six years old and struggled to recover from a routine procedure in 2020.
When Cooper’s oxygen levels finally returned to a safe level for him to go home, his parents thought the worst was behind them. Unfortunately, his condition deteriorated.
Two weeks later, Samantha says, “Cooper couldn’t walk up a flight of stairs without gasping for air. I called his doctors, and they ran a chest x-ray. They knew straight away something else was at play.’’
In hindsight, this was the start of Cooper’s long and uncertain healthcare journey. Only three months earlier, he had started Kindy, was playing sport with his friends and learning the alphabet. Then suddenly in what felt like just the turn of a page, his parents were facing a very unknown future.
Cooper was admitted to The Children’s Hospital at Westmead (CHW) where his doctors ran rapid reviews of his oxygen levels and found he had severe pulmonary hypertension. While there is no cure for the disease, doctors can try and slow down its damage, but they can’t stop it.
“Cooper was so sick that he was wheelchair bound, on a feeding tube and needed oxygen to breathe,’’ says Samantha.
Missing his school mates and little sister, it was gaming that brought Cooper some much-needed joy and a chance to make friends on the ward. Together, they dived into the meta-universe of Pokemon, Minecraft and Fortnite, which distracted them from the reality of a hospital ward.
After many months in hospital and despite the doctors’ best efforts, Cooper wasn’t getting better. His condition was life-threatening and his only choice was a double lung transplant. But this type of paediatric assessment and procedure is only available in Melbourne and NSW was in full lockdown at the time.
While the rest of NSW embraced new hobbies and tuned in to 11am daily COVID updates, Cooper was fighting for his life in hospital, waiting for an urgent medical exemption to be transferred to Victoria.
By 12.30pm the family were at Sydney Airport and a task force of medical professionals and government representatives from across the two states worked together to safely transfer Cooper to Melbourne and gift him these new lungs.
Recovery and rehabilitation for Cooper wasn’t easy. Due to severe post-transplant complications, it is unlikely he will be able to receive another set of lungs. The average life span for donor lungs is five years.
Samantha and Nathan cherish every moment they have with their beautiful boy. They go above and beyond to give Cooper the ordinary childhood he deserves, like spending time at school, baking homemade cupcakes and snuggling on the couch watching a movie.
Cooper’s family are so grateful for the extraordinary care of the respiratory team at CHW, and their clinician Professor Hiran Dr Selvadurai who gave them the precious gift of time. Today they are sharing their story with Sydney Children’s Hospitals Foundation (SCHF) to support other families too.
As the exclusive charity partner of Sydney Children’s Hospitals Network, which includes CHW, SCHF raises funds to help all children access the best possible healthcare, whenever and wherever they need it.
It’s thanks to the extraordinary efforts of our Movement of Many, that in FY23 SCHF donated $6.1M to SCHN to enhance the patient experience of sick kids in hospital like Cooper.
Donations to SCHF helped Cooper spend precious time in Bear Cottage with his family and participate in a memory making project called A Little Piece of Me.
An initiative of SCHF’s Art Program, A Little Piece of Me invites families receiving palliative care to create a photographic pixel portrait of their child, using small images of people, places and things that have shaped their life. Once collected, the photos are arranged by artist Andrew Christie to create a large portrait.
No child should ever experience an illness, but those who do deserve our all. Donate to schf.org.au to make a difference to the lives of sick kids today.
