Appeal to help Derry tot Darragh battle rare cancer
A four-year-old Derry girl diagnosed with a rare cancer behind the eye is set to go to America for ground-breaking proton beam therapy and needs the help of the people of Derry.
On February 13 last, Sharon McCleary’s daughter, Darragh (pictured), was diagnosed with rhabdomyosarcoma, a rare cancer that affects less than 60 children a year in Britain, most of them younger than 10-years-old.
Darragh is one of four children with siblings, Caitlin, 14, Eva, aged seven and three-year-old Sean.
Little Sean also has complex needs and has Hanhart Syndrome, which means he was born without a tongue, has a smaller jaw and is missing a foot. He also has to be tube-fed.
When Sharon and her partner, Sean, received the news in February that little Darragh had cancer, the family were totally shocked.
Sharon told the Derry News how they first thought it may have been a relatively innocent infection in Darragh’s eye.
“She woke up one day and it just looked like she had a wee draught in her eye so I took her to the doctor’s and they put her on anti-biotic drops, they thought it was conjunctivitis,” she said.
“A couple of days later, over the weekend, everybody thought it was her eyelid was dropping but I noticed it was her actual eye. I just knew there was something wrong so we took her back and Dr Casey was brilliant, he sent her straight over to Altnagelvin.
“That was on a Wednesday and by the Friday they had done an MRI and knew it was a mass behind the eye, they knew there was something there. They didn’t know what it was so we were straight in the ambulance to Belfast after that.”
After travelling to the Royal Victoria Children’s Hospital in Belfast, Darragh underwent immediate and rigorous testing and the news that it was cancer shattered Sharon and Sean’s world.
“Even though I knew myself there was something not right, never in a million years did we think it would be cancer,” she said.
“She was put to sleep so many times and had MRI scans, biopsies – everything was done over the weekend.
“Even on the Saturday night they had a fair idea what it was and by the Monday or Tuesday she was diagnosed with rhabdomyosarcoma.
“She is now just over her fifth round of chemo, he plan is nine rounds. She had her MRI in March and the tumour has shrunk a good bit but there’s still a bit there that just won’t go so they offered her the proton beam therapy in Florida.”
Sharon explained that radiotherapy causes damage during treatment but that proton beam therapy is more precise and limits adverse effects.
“During radiotherapy, when the radium is going in, it hits the tumour and when it’s coming out it does a lot of damage. They have told us already that the bones in her face might stop growing and it could damage tissue around her eye.
“The two ways it has to go in, there’s part of her brain that could be hit too, whereas, the proton beam goes straight into the tumour and doesn’t come out anywhere else and there’s less long-term damage.
“It can only be used on certain types of cancers and where Darragh’s is makes her eligible. It’s gone through the proton board in Florida, they have accepted her, but it has to go before a board in London to see if the NHSS will fund the treatment. We are just waiting on word now.”
Sharon said that she and her partner, Sean, will be talking Darragh to Florida and that they face five weeks away from home which will not only be costly financially but worrying as they will be leaving little Sean who has specific needs.
“We are going to be out there for five weeks; Darragh needs 25 doses so it will be a dose every day except weekends,” said Sharon.
“Sean has complex needs, he’s tube-fed and I’m the only one can pass his tube and when I’m away he might pull it out and the nurse will have to come out. He has Hanhart Syndrome, he was born with no tongue, he has a small jaw and wears a wee prosthetic foot, so it has been hard working round him and dealing with Darragh.”
Sharon praised and showed gratitude for the help and generosity of her family, friends, community in Rosemount and the wider Derry area.
“Everybody has been amazing,” she said.
“You always hear about the people of Derry and how good they are but until you’re going through something yourself, you just don’t realise it. The people of Rosemount alone have absolutely amazing.”
Sharon said that she had been in contact with other families who have had children go through the process awaiting proton beam therapy in America. She said once funding is approved by the NHS, things move very quickly and they may be scheduled to go there within weeks.
Sharon said there have been local events to help the family with living costs for the five weeks they will have to live in America and great generosity has been shown.
Steven Wilson, whose daughter went to school with little Darragh will be running the Derry Marathon to raise funds, however, Sharon has asked him to donate these to another charity set up by 17-year-old Derry lad and cancer survivor, Jamie Harkin.
“I asked Steven to give the proceeds to Jamie’s Journie because they have been brilliant to us since Darragh was diagnosed and Jamie is very sick himself and the minute and he’s still trying to help others. He just sat two GCSEs last week.”
A charity night has also been held in Village Inn to help the family and today, Sharon’s cousin, Aoibh Graham, got her hair cut off to donate to the Princess Trust, a charity that accepts donation of real hair to make wigs for children undergoing chemotherapy who have lost their hair.
Aoibh’s mum, Christine set up a Just Giving page and is asking for donations to help Sharon, Sean and Darragh with these living costs.
To donate to the Just Giving page for little Darragh just visit https://crowdfunding.justgiving.com/christine-graham to donate or search Facebook for Coffee Morning for Darragh for more details and you will find a link to donate to the Just Giving page.
A Coffee Morning event will also held at Lakeview Café at Creggan Country Park on Saturday next, June 4.
Sharon concluded: “It has been hard but we have to get on with it for Darragh. Hopefully, we will go to America and when we come back it will be gone.”