Alannah and Bryson’s journey with their three children, Jayden, Karissa, and Lorelei, has been filled with both challenges and joys.
Two of their children were diagnosed with ornithine transcarbamylase disorder (OTC), a rare genetic condition that causes ammonia to build up in the blood. Despite having the same condition, their journeys have been different.
When their oldest child, Jayden was just two days old, he began having seizures and fell into a self-induced coma due to the toxic level of ammonia in his system. Alannah and Bryson were given the choice to take Jayden home for the first and last time or start a treatment of dialysis that had never been used in this situation and was unlikely to work. Fortunately, it did.
While in the coma, Jayden suffered a brain injury and Alannah and Bryson were told that he would never walk, talk, eat, or even smile. But Jayden has proved everyone wrong and now has the ‘biggest smile’ according to Alannah.
Jayden’s next challenge was to stay strong enough to receive a liver transplant. The family flew to Sydney for testing and returned home to wait for a donor. When Jayden became too unwell to wait any longer, Bryson, prepared to donate part of his liver. Two days before the surgery, the hospital called to say that a perfect match had become available, and Jayden underwent surgery.
Alannah discovered Kiind after Jayden’s successful liver transplant. Having learnt more about Jayden’s condition online, and the frightening long-term implications for him and the family, Alannah felt exhausted and overwhelmed. Kiind’s Peer Navigators were able to provide Alannah and her family with information and resources to help navigate Jayden’s disability journey and connect them with other families in similar situations.
I think it is really vital to connect with other parents because there’s just so much power in being able to discuss what’s going on with your world. While I may not be experiencing the exact same path as the parent next to me, we understand each other, and we’re just there to listen.
When little sister, Lorelei came along 11 years after Jayden, she started to show minor effects of OTC at just a few days old.
At 10 months, she went into acute liver failure and was taken to Perth Children’s Hospital who stabilised her and arranged the Royal Flying Doctor Service to transport her to Westmead Children’s Hospital in Sydney. Lorelei spent time in the ICU before making a full recovery, but over the next few months, she repeatedly suffered deteriorating liver issues.
Amidst COVID-19 lockdowns and uncertainty, Alannah and her sister flew with Lorelei back to Sydney to begin the workup for her transplant and eventually, Lorelei was added to the transplant list. They waited in Sydney for over four months, spending Christmas as a divided family, part in WA and some in NSW.
Thankfully, Lorelei’s surgery was also a success. The teams of doctors that cared for and managed their children’s health have been nothing short of amazing. Alannah and Bryson are so grateful for each and every one of them, and the donor families.
Now, Alannah and Bryson work as a team to care for their three children. They advocate for Jayden and help him with his everyday tasks that we can take for granted, while Lorelei attends day-care and continues with her medication regime. They have also found time for family activities, such as story-time, homework, colouring, and living room dance parties, which all three children love!
Despite the challenges they face, Alannah has received great advice that has helped her along the way. She learned that “some things are out of your hands and that’s okay”. She urges other parents and carers “to reach out for emotional support when needed because no one should do this alone”.
Alannah and Bryson’s journey with their three children has not been easy, but they have shown great strength and resilience. Their story highlights the importance of emotional support, connecting with other families going through similar situations, and taking things one step at a time. With the help of Kiind’s Peer Navigators, families can navigate the complexities of the health system and find the information and support they need.