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'The doctors said my daughter was unlikely to walk independently... I simply refused to let that be the case'

After Londonderry woman Cheryl Tierney's two youngest children were born with lymphoedema - an incurable condition in which they suffer severe, painful swelling of their legs - she was determined to give them the best chance in life. Cheryl, who lives with husband Brian and children Cian, Shane, Mary-Kate and Ben, talks to Leona O'Neill

Staying positive: Brian and Cheryl Tierney with children Shane, Cian, Mary-Kate and Ben
Staying positive: Brian and Cheryl Tierney with children Shane, Cian, Mary-Kate and Ben

This is Lymphoedema Awareness Week, which is designed to raise knowledge of a painful genetic condition that affects more than 200,000 people across the UK.

Lymphoedema is a chronic condition that causes swelling in the body's tissues.

It usually develops in the arms or legs when the lymphatic system doesn't work properly.

It leaves sufferers in severe pain and with a weakened immune system.

One woman who knows this all too well is Londonderry mum Cheryl Tierney.

The 32-year-old student nurse, from Glencaw Park, is mum to Cian (13), Shane (10), Mary-Kate (7) and five-year-old Ben.

Cheryl's youngest children, Mary-Kate and Ben, suffer from the genetic condition, which causes them to suffer severe and painful swelling in the legs.

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It's a problem that can only be managed, not cured.

"My husband, Brian, and I were extremely excited to be expecting our first baby girl in September 2011," says Cheryl.

"I had a fairly normal pregnancy, with all the signs of a healthy baby. I had a natural delivery but was shocked when our daughter was born with her legs and feet severely swollen. At this stage, we had never even heard of lymphoedema.

"Ten hours later, Mary-Kate took very ill and spent three days in the neonatal intensive care unit. The doctors were totally clueless as to what the problem was. We took her home and over the following weeks we had no answers at all as to what was causing the swelling."

Cheryl fought to have her daughter diagnosed so that she could be treated for the painful condition, but the stress of the diagnosis and the trauma of having a sick baby took its toll on the Galliagh woman.

She developed post-natal depression and fought post-traumatic stress disorder. Despite her own mental health issues, she battled on for her daughter.

"After a few months of to-ing and fro-ing with no answers, management or treatment and Mary-Kate's legs getting bigger, I decided I had to get my own answers," she says.

"I got in touch with St George's Hospital in London, the UK centre for excellence in lymphoedema. I forwarded photos of Mary-Kate's condition and they confirmed our suspicions.

"I went back to our paediatrician, who confirmed the condition and set a care plan in place.

"To say my world was crashing and my heart was breaking wouldn't even do it justice. You just never think it's going to happen to you.

"The whole birth and worry and panic had left me ill.

"I was diagnosed with post-natal depression and post-traumatic stress disorder.

"I couldn't understand because I thought that only happened when you didn't bond with your baby. I didn't realise I'd gone the opposite way.

"I was obsessed with protecting her and fixing her. Even the depression wasn't going to stop me from getting the answers and help my baby needed.

"I was getting help and treatment for myself, and our mental health service was a fantastic help to me, but I didn't care about how I felt - I just had to make my baby better."

When Ben arrived in 2013, he was also diagnosed with lymphoedema but, since his sister had paved the way and set all the systems in place, his journey was an easier one.

"I'm incredibly proud now that despite my poor mental health at the time, I was able to fight for my daughter and then see the fruition of all that hard work when Ben came along," stresses Cheryl.

"His journey, albeit a difficult one, has still been a much simpler and less scary one.

"Almost seven years on from Mary-Kate's birth and five years after Ben's arrival, I am well within my own mind.

"I now appreciate that my babies do not need fixed or made better - they are absolutely perfect as they are.

"Lymphoedema is not them, but it is a small part of who they are. We just keep learning to live with and accept it as part of our lives every day."

Cheryl and her husband were told that Mary-Kate might never walk unaided, but the little girl inherited her mother's never-give-up spirit.

"We were told that she was unlikely to walk independently and her gross motor skills may be slow," says Cheryl.

"I simply refused to let that be the case. I fought for physio early on because I didn't see why we should wait until it (mobility) became a problem.

"Mary-Kate crawled at 11 months and walked independently at 16 months, all within the recommended time.

"There are challenges, but we face them head-on. Their legs and feet are chronically swollen, but they don't take any medication at all - we manage it through physical therapy.

"My husband and I do manual lymphatic drainage, which is a special type of massage that the physiotherapist taught us, several times a day.

"The children wear compression garments during the day that are specially made.

"They have to wear specially made shoes and have to have their legs put into a special night garment, or be bandaged.

"They have to have really meticulous skin care and nail care, and it does affect their mobility as well.

"Some days are great. You'll see me, Brian and the four kids in town and everything is great - nobody would even notice that there was anything wrong. Other days, the kids are in wheelchairs.

"But that is the nature of lymphoedema. Some days they can manage well, and other days they can't manage at all.

"They really struggle in the summer with the heat, and even in the winter with the snow. They went out for half an hour in the snow, but they had to come back in.

"It was too cold and their circulation got really bad. It really is a balancing act."

This year the two children were given wheelchairs to use when their condition flared up. It was a shock for the whole family, particularly Cheryl.

"I always thought when I had a little girl we would go shoe shopping and paint her toenails. It might sound superficial, but it's hard to have that taken away from you," she explains.

"I always wanted Mary-Kate to dance, but when we were told she would barely walk I just never dreamed of it again.

"But as she got bigger and kept doing more and more, I thought, 'Well why not?'.

"I brought her to ballet a few years ago and she absolutely loved it. I can't even describe the pride I felt when she passed her first UKA ballet exam. I almost burst."

Learning to use and getting used to the wheelchairs was a challenge, but the children showed immense bravery in the face of trying circumstances.

"Lymphoedema is chronic and progressive," Cheryl says.

"Some days are good. They might go a few months and might manage fine, but then something will flare up and we are sent back needing more treatment.

"We have had to progress onto wheelchairs from buggies in the last year.

"We weren't really prepared for that, because we have two children who can walk. We didn't think that was part of the plan, and it was a big thing for the whole family.

"I think Mary-Kate, because she is seven years old and a proper diva, has found this year tough emotionally.

"She is realising that she is a little different, but we talk her around and we tell her every day that she is amazing and that her lymphoedema is what makes her special. She takes it in her stride and is amazing."

Cheryl, along with the Lymphoedema Support Network, dreamt up the Sock It To Lymphoedema campaign, which was launched in 2012 and encourages supporters across the UK to wear odd socks during Lymphoedema Awareness Week.

"All our kids' classmates are doing the odd sock day on Wednesday," she says.

"They take in information sheets from the Lymphoedema Support Network and tell all their friends about it. That helps them cope a little better with it.

"When children know what is going on, they don't point and stare. That has always been what we have done - we have been open with Mary-Kate and Ben and we gave them the confidence to be open with others about their condition."

While Cheryl admits managing the condition can be tough, she says she and her SDLP councillor husband make a strong team that just "keeps going".

"There's always times where it feels overwhelming, like when we have a lot of appointments at once or there's new information, or when they are struggling and you just think it's not fair, like you can't deal with another day or another setback," she adds.

"You have to have a wee cry, dust yourself off and remember these lives are in your hands.

"I have to carry on doing my best for them and making sure they get the best possible care they deserve.

"I believe it's my job to build them up to believe in themselves and be proud of who they are and what they deal with.

"I want them to have the confidence to try anything they dream of, and we will do our best to find a way around the lymphoedema obstacle.

"I just want them to grow up knowing we did our very best for them. Their health and happiness is all that matters."

Cheryl is determined to ensure her children don't let the condition rule their lives.

"There is no cure for lymphoedema, so it is always going to be a part of their lives," she says.

"That is why we try to give them as much control as possible now that they are getting a little bigger, because they are going to have to be able to manage it themselves.

"We have a great team around us now, who are fantastic.

"Brian and I are also a very strong team - it is the only way to get through this.

"If we didn't work as a team and bounce off one another, we would never make it as a couple.

"Any family who has a child with special needs will know that it is really tough.

"We just plough on and hope for the best."

Lymphoedema Awareness Week runs until Saturday

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