Support for Carrick schoolgirl's treatment fund 'humbling'

A Carrickfergus man has told of how he "stepped up" to care for his desperately ill sister after she was diagnosed with a brain tumour.

Ianessa Connor.
Ianessa Connor.

Eight-year-old Ianessa Connor is due to travel to Florida next month for vital Proton Therapy to treat the condition.

Her brother, Steven, described how the schoolgirl's illness came during an already devastating year for the family following the death of their mother and grandmother.

Ianessa, a pupil at Eden Primary School, first became unwell in May 2016.

Steven, Ianessa, Shannon and their mum Christine.

Although doctors initially believed she had a viral infection, she began to suffer seizures and was rushed to Antrim Area Hospital.

There, her family received the news that a tumour was putting severe pressure on her brain.

Ianessa was transferred to the Royal Victoria Hospital for Sick Children, where she underwent surgery to have drains and a shunt inserted.

She was then diagnosed with Craniopharyngioma, a benign tumour of the brain.

Ianessa in hospital.

"We where relieved to hear that it was benign," Steven said.

And although the surgery was a success, the family's turmoil was not over.

"About one month after her official diagnosis Ianessa was back home," Steven said. "Then our granny got sick and went into hospital for a short while. She passed away from cancer on September 15, 2016. Our family was devastated.

"Nanny lived next door to Ianessa and Mum, so Ianessa was always in with her. Life just got more difficult."

Steven, Ianessa, Shannon and their mum Christine.

Tragedy struck the family once more when Steven and Ianessa's mother, Christine, passed away suddenly due to sleep apnea in May.

"Losing my granny was a hard blow to our family; she was the glue that held us all together," Steven said.

"But when my mum died it was the worst feeling in the world. It was such a shock."

With the loss of their mother, Steven became the guardian of his little sister. "I had to step up and be there for her, for my other sister Shannon, and our aunt Denise," he said. "That's what my mum would have wanted me to do."

Ianessa in hospital.

"Just four months after Mum died, we found out Ianessa's brain tumour was growing and again she needed emergency surgery. They needed to remove the growth and do a biopsy on it.

"The risk of this surgery alone was massive; [it] took place on October 9 and lasted over six hours.

"The surgery was successful with none of the side effects we where worried about. But on December 1 we where told by the oncologist that our little princess has cancer."

However, NHS-funded Proton Therapy in the United States has offered a ray of hope for Ianessa.

"This Proton Therapy has to potential to remove Ianessa's tumour completely," Steven added. "At the minute it looks like she will be in Florida at the very least eight weeks. Although we've got the funding for the treatment, there'll be day-to-day living costs while we're there."

Steven, his partner Ben and Ianessa will travel to the USA next month to allow the schoolgirl to undergo the pioneering treatment.

A GoFundMe page has been set up aiming to help Ianessa and her family meet the costs of the trip.

"Some of the people who have made donations to the fundraising page, we don't even know. For people to want to help our family like this has been very humbling," Steven said.

Meanwhile, primary five pupil Ianessa is "taking it all in her stride".

"She says we're going to Florida to kill this brain tumour once and for all," her brother said.