On July 28 more than a thousand people will walk around the city’s walls to raise awareness of the rare cancer Sarcoma.
Among them will be six-year-old Darragh McCleary who was diagnosed with Rhabdomyosarcoma in 2016.
Rhabdomyosarcoma is a type of soft tissue tumour.
Fewer than 60 children are diagnosed with rhabdomyosarcoma in the UK each year and most of them are younger than 10 years old. It is more prevalent in boys than girls.
The most common symptom is a lump or swelling and the symptoms will depend on the part of the body that is affected by the tumour.
Mum Sharon told the ‘Journal’ Darragh received the shock diagnosis after going to the doctors with what they believed was an eye infection.
“She wasn’t even unwell. She looked like she had a wee draft in her eye and when we went to the doctors she was prescribed an antibiotic cream for conjunctivitis.”
However as the days went by it wasn’t clearing up so Sharon took Darragh back to the doctors.
“It looked like Darragh’s eye was dropping rather than the eye lid, so the doctor referred us immediately to the eye clinic at the hospital.”
The following morning Darragh, who was just four at the time, had an MRI scan.
“We were blue lighted up in an ambulance to Belfast after the scan and they did a biopsy the same day and she was diagnosed with Rhabdomyosarcoma.”
Sharon said the diagnosis was ‘traumatising’.
“It was a really, really big shock and such a scary position as a parent to be in. Even at that stage cancer had never even entered my head. I was still thinking it was a bad eye infection.”
Darragh was placed under the care of an oncologist and had further tests and scans to ensure the cancer had not spread before beginning a course of chemotherapy. Sharon said it was a difficult time for the family and Darragh’s siblings, one of whom has complex needs, as the majority of their time was spent in Belfast.
Darragh was reviewed after she had three courses of chemotherapy and doctors noticed that the tumour wasn’t shrinking as much as they had hoped.
She was referred to America for eight weeks of proton beam therapy. “Darragh didn’t seem to be in any pain and you wouldn’t even know she had cancer. She just got on with things and was a wee trooper.”
In October 2016, the family got confirmation that Darragh was in remission.
“She has a scan every three months and a chest x-ray as a relapse usually shows in the chest area first with this type of cancer. So far the scans have been all good and Darragh has been getting on with things.
“If you think something isn’t right with your child go and get a second opinion and get every lump and bump checked out. We were lucky Darragh’s cancer was caught early.”
Throughout Darragh’s journey, Paul’s Campaign have been on hand to offer support to the McCleary family.
The charity was set up in memory of Derry man Paul Coyle who died in 2011, just weeks after he was diagnosed with sarcoma. The walk around the City’s walls is an annual event.
“With it being so rare there is no real support out there apart from Paul’s Campaign”, Sharon said. “The charity has been amazing to us as a family. They have become our friends and we would be lost without them.”
The McCleary’s were one of the first families to benefit from a free holiday to Donna’s Dream House in Blackpool, thanks to a partnership between two charities.
Paul’s Campaign hopes to offer ten families with sick children and parents who have lost a child through illness to the Lancashire Resort after teaming up with the Donna’s Dream House Charity.
Sharon said her family loved every minute of the ‘once in a lifetime opportunity’. “We had an absolutely brilliant time, Darragh had a ball and my other kids didn’t want to come home. It’s not that often we would get away so to spend time together as a family was amazing.”