Having one child with a rare condition is challenging, but when a family receives a diagnosis for their second child, that wave of fear comes crashing back, now knowing the road that lies ahead.
Alannah and Bryson are the parents of two children born with a metabolic condition affecting their livers. While their journeys have been different, both have required life-saving transplants.
Their oldest son, Jayden, faced seizures and a self-induced coma at just two days old due to toxic ammonia levels. Alannah and Bryson were given the choice to take Jayden home for the first and last time or attempt a treatment of dialysis that had never been used in this situation.
Fortunately, the treatment worked, and at seven months of age, Jayden was able to receive a liver transplant, marking the beginning of the family’s transplantation journey.
Eleven years later Alannah relived the emotional turmoil when her baby girl, Lorelei, showed symptoms of the same genetic condition a few days after birth. At 10 months, Lorelei went into acute liver failure, and at 21 months, had her own liver transplant.
Transplant Australia provided constant support for the family throughout their journey of two liver transplants.
As a new Telethon beneficiary, Transplant Australia supports Western Australian paediatric transplant recipients and their families. It offers a dedicated camp experience to build a connected community of peers, enhancing mental and physical wellbeing.
“I think it is vital to connect with other parents – there’s just so much power in being able to discuss what’s going on with your world,” Alannah said.
“Through camps, transplant games, and regular catch ups with families that have been through the same journey, our family no longer feels alone,” she added.
Thanks to a new Telethon grant, Transplant Australia can deliver a crucial program that champions better health outcomes for WA children who have undergone life-saving transplants and their families.