Daily Mirror (Northern Ireland)
I was stunned after Nanny died, devastated when my mum died.. now my little sister is relying on me to help her fight brain cancer
WHEN Steven Connor’s mum and grandmother died unexpectedly just months apart he knew he had to look after his little sister.
He understood he would face tough times filled with grief, tears and difficult questions from Ianessa who is just eight.
But he never expected to be raising funds to get her to hospital in America to have treatment for a brain tumour.
However, between everyday school and play routines, hospital visits and scans that is exactly what he is doing.
Steven, from Edenvale in Carrickfergus, Co Antrim, would admit himself he was not sure if he was equipped for such a journey, depending until recently on his mother Christine and grandmother Ann for unwavering support.
The 27-year-old said: “Well, I’ve had to step up. Ianessa and I have another sister Shannon, who is 19, and who also needs support and I help with my aunt Denise who is disabled.
“I just never expected to have a little girl of eight years old relying on me to get her life-saving surgery in the US.
“But it’s here and it’s happening and the upbringing my nanny and mum gave me has actually prepared me for this – prepared me to stand up and do what’s needed when it’s needed.
“Along with my long-term partner Ben Mccann and the support of friends and neighbours we will see this through.”
Steven and Ianessa’s mother died suddenly in her sleep in May. It is believed she had suffered from sleep apnoea that had gone untreated. She was just 45.
Their grandmother, Ann, had passed away, aged 66, from blood poisoning eight months earlier following a cancer diagnosis.
Now the family’s focus is on Ianessa and her battle to beat a brain tumour that is threatening her life. Steven added: “I was stunned after my nanny died, and devastated and shocked after mum died, but this is by far the most scary thing I’ve ever faced.
“We are really lucky we have been given 85% funding by the NHS for Ianessa’s treatment but we have to pay for our travel and living expenses while we are over there – And we will be there for at least eight weeks. When I think about it I fill with panic and then I realise I just better get on with it.
“Ianessa is only a little girl and she has lost so much with the deaths of nanny and mum and she is relying on me to make this illness right.”
“When I told her she had cancer she said she’d have to go and keep nanny and mum company now.
“It was heartbreaking. I was stunned. I explained we wanted her to stay with us so we would try to get rid of the cancer and we could all go and see nanny and mum some time when we were much older.”
Steven is struggling to remain calm about getting enough funds put together to ensure the trip can go ahead.
He said: “I’m not working and I’ve been doing everything to save a few pounds anywhere I can.
“I had been a smoker and I just stopped right away. I’d do anything I could to help Ianessa. I have never asked anyone for anything apart from support and care from family and friends and it feels very alien to be asking complete strangers to donate money to our fund.
“But I have to face the fact we need help and I’m man enough to ask for it for Ianessa.”
In desperation, this brother-turned-dad has set up a Gofundme page in her name.
He added: “Ianessa has always been a brilliant little sister, a little old soul in a tiny body, ready smile and a loving heart. I’m proud to call her my sister and now proud to be her dad. I have had to step up and act as her dad.
“The focus has moved from getting us settled with our middle sister Shannon, in our family home, to full panic mode where we are expecting to fly to Florida to get pioneering treatment to try to get rid of Ianessa’s brain tumour.
“I keep hoping the whole situation is just a big nightmare and I’m going to wake up in a moment. But it’s true,
I’m proud to call Ianessa my sister and now I’m proud to be her dad STEVEN CONNOR CARRICKFERGUS
it’s real and it’s scaring me big time but I have to be brave for this wonderful little girl. And she is leading the way, being brave and her normal wee self.”
Ianessa had surgery to remove part of a non-malignant tumour in October but a recent scan revealed a cancerous growth in her brain. Steven said: “Initially she was diagnosed with craniopharyngioma, a benign brain tumour, and we were very relieved to hear it was benign but she was suffering multiple seizures. But about a month after her official diagnosis she was back home and things were looking good – surgery had been a success and about 90% of the tumour had been removed.”
But after the deaths of Ann and Christine, and just as Steven was getting some routine back into the home, the dreaded cancer diagnosis hit.
He said: “Just four months after mum died we found out Ianessa’s brain tumour was growing and she needed emergency surgery. The surgery took place on October 9 and it lasted over six hours. It was successful with none of the sideeffects we were worried about. But a throwaway comment in hospital on December 1 turned our world upside down.
“An oncologist said our little princess has cancer and we would be working with a charity called CLIC Sargent and a referral had been made to Hope House. But a week later we were told Ianessa has been accepted to attend Jacksonville, Florida at the Proton Institute at the start of January to deal with this brain tumour once and for all I hope.
“This proton therapy has the potential to remove Ianessa’s tumour completely and we’re keeping hope in our hearts and hoping our mum and nanny are looking after us.”
To support the appeal visit www. gofundme.com and search for Ianessa’s Proton Therapy Fund.