Ulster woman born with rare condition to host charity event

Amy Mullan was born with Cystic Hygroma, a rare condition involving a malformation in the lymphatic system which occurs in just one per cent of children.

“My mum found out that I had the condition when she was pregnant. It was in the days before we had a computer in the house and my dad looked it up on the internet while he was at work,” said Amy.

“I was born in the Royal Victoria Hospital in Belfast and spent the first four months of my life there. The lymphatic malformation caused a huge cyst on the left hand side of my face, which went right down to my chest. It was around my airwaves and doctors were concerned about my breathing,” she added.

As a result Amy, who is now a 20-year-old university student, had a tracheotomy and was tube fed.

She underwent her first major surgery at just 12 days old, something which, she said, was very hard on her mum, Lucia.

She went on to have multiple surgeries during the first few years of her life to remove the cyst.

“I spent a lot of time in and out of hospital. I would have picked up a lot of infections, particularly tonsillitis and ear infections and post operative infections.”

As she started school Amy remained under the care of Mr. Derek Gordon in the Royal and her surgery was scheduled for holiday periods.

Six years ago she was referred to Mr. Hiroshi Nishikawa in Birmingham Children’s Hospital for further major facial reconstructive surgery.

“He is the top plastic surgeon in the UK and it’s a privilege even going to him,” Amy noted. “He had ideas that no other doctor had ever even mentioned, which was really exciting.”

The condition has never held Amy back and she credits her positive attitude to her parents.

“It never, ever stopped me in any way - not at sport, making friends or at school. It was never a big deal, at times it was an inconvenience being in and out of hospital and that mindset made me not get caught up in it.

“My mum told me as a child I had a ‘wee sore cheek’ and the doctors were going to fix it. That was the line I grew up with. Because it was from birth I never really worried about it. If my face had been paralysed later in life it might have been a bigger deal.”

Amy has had three surgeries under the care of Mr. Nishikawa and built up a great relationship with him.

“Birmingham is the most amazing hospital. It’s a completely different atmosphere to any other hospital. Nurses and doctors talk to you instead of your parents and the relationship you have with them makes it so much easier getting a 10 hour operation because you trust them.”

Amy, who is studying Event Management at Leeds University, has opted to put plans for any further surgery on hold for now.

“Mr. Nishikawa has told me that in another five or 10 years there will be another surgeon who might have even more groundbreaking ideas. I’m happy with where I am now. Looking back over photos recently there is a big difference from when I first travelled over to Birmingham. It’s not perfect but then, nobody is.”

During one of her hospital admissions, Amy became aware of the work her surgeon does with the charity Facing Africa.

“Mr. Nishikawa and his team travel to Ethiopia twice yearly to perform complex facial reconstructive surgery on the victims of the flesh eating disease, Noma and other facial deformities.

“Their work is life changing for these children and is completely voluntary.”

Therefore, Amy has decided to host a fundraising event as a way of thanking her surgeon for all he has done for her.

“I realised that even though it isn’t an ideal situation to have to have multiple surgeries, mine were always exciting and adventurous. The children out in Africa don’t have medical care. The work Mr Nishikawa does is amazing and I wanted to make a small gesture to express my gratitude.”

Amy put a post on social media to inform people about the event and shared her story to many people for the first time.

“A lot of people knew I have a condition, but they didn’t know exactly what it was because I don’t get caught up in it or talk about it. After I put the post on social media, people were getting in touch to say it was so interesting and it felt good to raise that awareness.”

Amy has organised a dinner dance in the City Hotel, Londonderry on September 29 and Mr Hiroshi Nishikawa and a representative from Facing Africa will be her guests of honour. There will be live music by local artists and a raffle.

Tickets for the event are priced at £28 and can be purchased by contacting Amy on Facebook, on 07542936039; or [email protected] or via PayPal at [email protected]