A young woman, who developed a complex facial tumour as a child, is running the Newry 10k in an effort to raise awareness and funds for the incredible charity she believes saved her life.
At just eight weeks old, Orlaith O’Rourke (22), from Kilkeel began to show signs of a facial swelling that had initially baffled NI doctors.
Speaking to Armagh I, Orlaith explained: “My mummy started noticing a swelling on my cheek and where my salivary gland would be. It started off small but was getting bigger and we went to the hospital and doctors but they just said to keep an eye on it. They didn’t really know what it was but it was getting bigger every week.”
The mass, which surrounded her cheek and ear, continued to grow and eventually began to have an affect on her facial features.
“When I just turned a year old it was that big that it started to drag down my eye and my face started to droop and at this point my mum and dad were getting really worried,” continued Orlaith.
It was around this time that Orlaith was diagnosed with a Parotid tumour – an often benign tumour which occurs in the parotid glands sitting just in front of the ears.
However, local doctors were hesitant to operate on the now “orange-sized” tumour which was showing no signs of slowing.
“No hospital at home was willing to remove it because I was so young and there was very high risk of nerve damage and facial paralysis,” said Orlaith.
“It was a very high-risk operation. They didn’t want to touch it they just wanted to give steroid injections until I was in my teenage years.”
As fate would have it, Orlaith’s mum, Ann, happened upon a BBC Documentary on a lazy day at home in 2002 which focussed on the work of Dr Iain Hutchinson and his charity organisation, ‘Saving Faces’.
Said Orlaith: “His whole life’s work is dedicated to literally saving faces, removing tumours and fixing disfigurements, big or small. At the end, it said if you are affected by this call the number. The next day she rang and got in contact with Dr Hutchinson and within three weeks I was taken for my consultation.”
By this stage little Orlaith had been living with the painfully visible growth for two years. But – despite the risks involved – Dr Hutchinson agreed to perform the surgery.
In March 2003, Orlaith travelled with her parents to London where she went under Dr Hutchinson’s knife for eight “petrifying” hours; braving all the associated risks including facial paralysis and nerve damage.
The operation, however, was a resounding success – much to her terrified parents’ delight.
Now, 20 years on, Orlaith is doing all she can to give back to the doctor she says “saved my life and my parents’ lives”.
Continued Orlaith: “Since I’ve had the surgery, I have gone every year for check-ups until I was 16 years old. All is good! I looked forward every year to going over; for the peace of mind and seeing Dr Hutchinson.
“He still stays in touch with me twenty years down the line. I owe my life to Dr Hutchinson and Saving Faces. I’m forever in debt to them.”
Since her surgery, Orlaith no longer lives with the threat of an ever-growing tumour turning cancerous or changing her appearance. She now proudly shows her minimal scar – despite having endured somewhere between 60 and 70 stitches – and welcomes any opportunity to talk of her experience.
But now, she says, Saving Faces needs her.
“Facial disfigurement and facial cancer and what Saving Faces as a charity do is severely underfunded. No one knows about it or has heard of it before.
“I said to Dr Hutchinson I’m perfectly happy to be an advocate and raise awareness and do some fundraising.
“We decided that the Newry 10k would be the perfect thing to do as a fundraiser. The whole family can get involved and I’m going to be running with the Saving Faces t-shirt on to hopefully get people asking “What is that?” and raise some awareness.”
The soon-to-be nurse has also started a GoFundMe page with a target of £700 which she said, “has really taken off”.
The run is due to take place on May 26 and Orlaith is getting well prepared to put her best foot forward on the day with frequent early morning runs scheduled into her training regime.
Said Orlaith: “It would mean the world to give back to them. I’m forever in debt and they have made me who I am today. They saved my life and my mum and dad’s life. It’s hard to put into words.”
