Four-year-old living with a rare genetic disorder

Little Grayson’s world has been a flurry of specialist appointments, blood tests and scans since his diagnosis

LIFE with a rare genetic disorder means frequent visits to the doctor, scans and blood tests for four-year-old Grayson Pearsall.

The youngster suffers from Neurofibromatosis or NF1, which causes tumours to grow on nerves throughout his body, brain and spine.

He has benign tumours around his nervous system within his brain, a cluster of tumours along his spine and optic glioma that is thickening both his eyes which requires constant medical attention.

For his family, Grayson's diagnosis is about managing the symptoms of his condition - in terms of its physical impacts as well as mental and behavioural.

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Since Grayson's diagnosis with Neurofibromatosis 1, life has been a flurry of MRIs, scans and tests for the Kensington Grove family of four.

Caramel-coloured spots began appearing on baby Grayson's skin when he was only a few weeks old but his doctor at the time waved off the family's concerns.

"He was born with no marks but they started to lift through his skin," Grayson's mother Jennifer Pearsall recalls.

"When he was about six months old, Grayson's GP noticed the spots, saying they could be a sign of NF - but they said not to stress about it."

It wasn't until the youngster had a severe allergic reaction that his parents were forced to confront reality.

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"He had a reaction to an egg when he was about a year old and we had to take him to the hospital," Ms Pearsall said.

"The paediatric specialist noticed Grayson's spots and said 'look, I think it's NF and, if it is, you need to get that checked out as soon as possible'."

The moment marked a shift for the Pearsall family.

"That was the start of our big journey of trying to understand the disorder," Ms Pearsall said.

For Grayson's parents, joining the Children's Tumour Foundation, a networking group for families of those impacted by NF1 has relieved some of the burden.

Ms Pearsall will be participating in a fundraiser event, the Cupid's Undie Run to raise money for the CTF, which runs from February 14-28.

To get involved, visit cupidsundierun.com.au.

 

Read more news by Ebony Graveur.

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