Boy with neurofibromatosis could be Qld’s bravest kid

Nicholas Daisley’s parents have no doubt he is: “We are OK with him just the way he is, and more importantly he is OK with himself.”

WHEN Queensland boy Nicholas Daisley asks his mum why he looks the way he does, she simply replies: “Mate, you were born with a wonky face and I was born short.

“We are who we are and we have to live with it.”

The Daisleys’ matter-of-fact attitude has instilled a no-fear approach to life in 12-year-old Nicholas.

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He takes on the world with a courageous heart and is possibly Queensland’s toughest kid.

As far as mum Dannielle and dad Phillip are concerned Nicholas is perfect, actually better than perfect.

“The first time he fronted up to play for the U15 Glenmore Bulls I was so proud of him,” his mother told The Sunday Mail.

“The boys around him were all so big and he looked incredibly small and vulnerable but he absolutely did not hold back.”

Nicholas Daisley with mum Dannielle. Picture: Steve Vit

Born with neurofibromatosis, he carries a large benign tumour on his face, has a prosthetic eye and is partially deaf – add that to his tiny frame and playing up a few years at his AFL club is nothing short of heroic.

“He gets stuck into the game just like every other player,” his mum said.

“Sometimes it is funny as his prosthetic eye will pop out so he has to rush and find the water boy, give it a flush-out.

“He just sticks it in the socket and gets back to the game.”

Danielle says Nicholas is just an ordinary boy and is treated like everyone else.

“That is the key for us as a family,” she said.

“We don’t give Nicholas any preferential treatment. He gets in trouble just like his big sister and is encouraged to try everything at least once.”

His doctors at Queensland Children’s Hospital have encouraged him to do everything he wants to do.

Don’t hold back, they say.

Nicholas Daisley as a young child

Nicholas, from Rockhampton, suffers from NF1 and doctors say as he grows his facial deformity will worsen.

NF1 is the most common of the rare genetic conditions which come under the umbrella of neurofibromatosis.

It affects up to 1 in 2500 people.

Features and symptoms usually appear in the first few years of life, but is an extremely variable condition, with some people having very mild symptoms that do not impact their lives while others can require minor medical intervention or have life-threatening complications.

“The main problem is that even if Nicholas has surgery to correct his face the tumour will grow back,” Dannielle said.

“He went through surgery when he was five and it was tough.

“We are in no rush to go back for more.

“At the moment Nicholas is a very happy boy and in no need of cosmetic intervention.

“We will watch and see what changes come with puberty.

“But for now we are OK with him just the way he is, and more importantly he is OK with himself.”

Nicholas Daisley as an infant

When Nicholas was born his face had no tumour but doctors picked up that his eye was protruding.

They investigated further and picked up that he had neurofibromotisis.

As time passed some brown or cafe au lait marks started to appear – a warning sign.

“He had glaucoma and his left eye became blind and painful and was removed in 2007,” mum said.

“It wasn’t until he was two that the tumour started to warp his face.”

Dannielle says she was certainly upset when Nicholas was younger and was the target of lingering looks or cruel comments from strangers.

“You become immune to that, and certainly Nicholas knows not to take it on,” she said.

“We are very lucky in Rockhampton to be surrounded by people who just accept Nicholas for the lovely soul that is and they love him.

“His footy mates are amazing and so protective.

Nicholas Daisley in action for the Glenmore Bulls alongside older players. Picture: Steve Vit

“When he is playing with the big boys they make sure he is not gang-tackled.

“When he played in the younger teams some kids would make cruel taunts, but that is just immaturity and that passed.”

Queensland Children’s Hospital ophthalmologist Professor Tim Sullivan says Nicholas has been looked after by a team of plastic surgeons, neurosurgeons, paediatricians, ophthalmologists, orthodontists, geneticists, speech therapists and many others.

“All of the abnormal tissues present can be expected to continue to grow throughout Nick’s life, increasing his deformity,” he said.

“Recently, MEK inhibitors – drugs that target the pathways that lead to nerve and tissue overgrowth – have been under trial with good effect at Queensland Children’s Hospital.

“Nick may be a candidate for one of these or for rehabilitative surgery at some stage in the future.”