For Alison and Brendon, the first few months of their baby son William’s life started like any other family’s, but during his first year the first-time parents began to notice that William wasn’t meeting his milestones. By 12 months old, when William was not yet rolling, sitting up or crawling, they sought help to figure out what was happening with their son.
What followed was a parent’s nightmare - an agonising two years spent in specialists’ offices to figure out what was wrong..
When there continued to be no improvement in his condition, William was referred for genetic testing to find some answers. Finally, at three years of age, and years of testing, William received a diagnosis - Neurofibromatosis type 1 (NF1).
NF1 is an incurable disorder affecting about 1 in 3,000 children worldwide. Children develop tumours that affect the brain, spinal cord, and the nerves that send signals throughout all parts of the body. It can cause a child to feel very weak and fatigued, which makes simple tasks like walking, playing and eating difficult. At the same time, William was also diagnosed with ASD and ADHD.
“Receiving the diagnosis was devastating, but we were relieved that we finally had a diagnosis,” Alison remembered, “but you move on and do everything you can to give your child as normal a childhood as possible.”
William was referred to The Children’s Hospital at Westmead and since then has visited every few months, seeing a multidisciplinary team across more than ten specialities.
“The staff at The Children’s Hospital at Westmead are fantastic. They just know how to talk to kids with autism and it’s so handy to have all of the specialists that William needs at the one location,” said Alison.
“William’s connected with the staff, and remembers them all by the first letter of their names. He also has had to stay in on a few occasions and finds the beds pretty comfortable, as well as enjoying the unlimited screentime!”
In 2020, William’s family were given the opportunity to take part in a clinical trial to help children with NF1 gain muscle strength and decrease fatigue. This trial turned William’s life around.
William’s dad Brendon recalled, “Before, William couldn’t swim 10 metres and struggled to get out of the pool. He just didn’t have the energy or the muscle tone to do it, but when he started the trial, he progressed in leaps and bounds. It gave him a bit more motivation to keep going.”
William has felt such improvements from the trial that they have decided to continue with the medication as part of his treatment.
While his parents navigate the logistics of his treatment plan, 11-year-old William enjoys playing with his younger brother Matthew and is a real bookworm, having just tackled the Famous Five series.
When he grows up, William wants to be a primary school teacher, and his parents have his full support. “We will support him every step of the way,” said Alison. “We know that William can achieve anything he sets his mind to.”
By supporting this year’s Bandaged Bear campaign, you can help fund ground-breaking and innovative research that could lead to finding the answers for kids living with incurable, life-long conditions. Together, we can help change the lives of kids just like William.