Brisbane mum spotted a detail in her son’s reflection that changed his life
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Every day, mum-of-two Rebecca Lilly wakes up in fear that the tumours in her son’s body have grown and spread.
Credit: 7News.
When Dexter was born, Rebecca immediately noticed that there were some abnormalities in the appearance of her son. He had a sunken chest, several birthmarks over his body, and his head had an unusually “odd” shape.
Growing up, she also noticed that his behaviour was unusual for his age, describing him as a “really unsettled” baby. So she took him to doctors for a diagnosis, but they dismissed her concerns and simply said that not all babies are born perfect.
However, one incident completely changed her mind.
When Dexter was about 13-months-old, Rebecca saw his son’s face in a mirror reflection, and she was so shocked when she noticed that his face was so misshapen, there was actually no symmetry at all.
She almost did not recognise her son because he looked like an entirely different person in the mirror.
After a tiring string of GP visits who repeatedly dismissed her concerns, she finally met a doctor who properly recognised Dexter’s condition.
That’s when the toddler was diagnosed with neurofibromatosis.
Credit: 7News.
Neurofibromatosis is an incurable genetic condition that causes tumours to grow throughout the body, with symptoms presenting as coffee-coloured spots on the skin.
These tumours can lead to complications such as deafness, blindness, paralysis, deformities, learning disabilities and chronic pain. Unfortunately, they have invaded Dexter's mouth, tongue, brain, spine and cheeks.
His tumours were identified as plexiform neurofibroma, a fast-growing mass that infiltrates the nerves.
While Dexter's tumours are thankfully benign, there is still a 50 per cent chance they could turn malignant.
Meaning, doctors had to move fast.
“The tumours were outgrowing him,” said Rebecca. “He wasn’t an unhappy baby, he was crying out in pain, and the only thing that would comfort him was a cuddle from me.”
“What did he do to deserve this?”
Credit: 7News.
Surrounded by a team of 20 specialists in the hospital, Rebecca was told that there was nothing they could do to save the 15-month-old boy. An absolutely heartbreaking reality that tears anyone who hears it.
Even though plexiform neurofibromas can be surgically removed, the process would be extremely dangerous for Dexter. In the worst-case scenario, he may bleed out on the operating table.
But with months left before the tumours completely block the child’s airways, Rebecca knew she had to do something. Anything.
That’s when she came across a drug called Trametinib, which was reported to have yielded good results in stopping rapid tumour growth.
And with the news that the hospital was looking for participants for the second phase trial of the drug, she knew she had to let Dexter apply.
Even though they did not initially make it to the cut-off, Dexter, later on, managed to get a spot.
This is the point where Dexter’s life started to take a turn for the better.
Credit: 7News.
Since the pandemic travel restrictions barred their family from bringing Dexter to Sydney for the trial, they were given the go-signal to stay in Brisbane instead.
There, they would continue taking the drug, which can be obtained from their local pharmacy.
The medication is free, and in return, Dexter just has to undergo any testing that may be required under the parameters of the trial, but they're no longer required to travel to Sydney.
Though, the doctors have warned their family that Dexter’s tumours may grow, despite the treatment, once he reaches puberty.
But to Rebecca, she said that she will be forever grateful that her son is still here.
Dexter is currently in the second grade, living as a healthy seven-year-old boy in Brisbane. He’s calling the spots brought by the tumours “superhero spots”.
It’s amazing the strength of some individuals in the face of a life-threatening illness. We are so glad to hear that Dexter is doing well and wish all the best for him and his family.
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