Special mother, special day

When Mary Collier was told her youngest daughter Lucy had a rare genetic condition, there was one thing the mother of three was certain of — her daughter would never be alone in the diagnosis.

Lucy, 13, was diagnosed with a rare condition called neurofibromatosis type 1 — a genetic disorder that affects one in 3000 people.

The condition causes tumours to grow throughout Lucy’s body, with one currently wrapped around the optic nerve in her eye and another on her spinal cord.

On top of the diagnosis, Lucy also has scoliosis and epilepsy.

It’s true the youngster hasn’t had an easy start to life, but she has never let her condition slow her down.

After she finishes the school day, Lucy keeps busy on the family farm in Dongara by helping out her dad, Chris, or swimming in the pool.

Mrs Collier does admit it was hard to not be protective over her youngest, who was first diagnosed at five years old.

“When we first heard of the diagnosis it was quite daunting, and that was made even harder by being told if she made it to 21 we’d be doing well,” she said.

“The condition is just not something you hear of very often and when she was young we were tempted to wrap her in cotton wool for awhile, but she just wanted to be a normal kid.

“She’s a real cracker of a girl. We’re based on a farm near Dongara and, despite having to wear a hard brace for the scoliosis, she’s always getting out into the pool or she’s around the animals.

“Even with her treatments she’s such a little warrior. Every 12 months she has to have an MRI and she just knows the drill and carries on. She’s amazing.”

Mrs Collier and Lucy travel to Perth every four to six weeks to visit the nine specialists required to treat Lucy’s condition.

Working in Geraldton as a support co-ordinator for disability support network Midwest Community Living, Mrs Collier uses her annual leave days to make the trips possible.

But when complimented on her dedication, Mrs Collier said it was her children who deserved praise.

“All my children are my inspirations. We know Lucy is terrific, but my boy Rowan, 18, and other daughter Tara, 16, have also made me very proud,” she said.

“Living through the diagnosis with Lucy has made them both very empathetic people and it’s lovely to see.”

World NF Awareness Day is on May 17.

“Lots of people say that they understand, but some really don’t,” Lucy said.

The Children’s Tumor Foundation is at ctf.org.