If we’d known after she was born how well we are and she is today, we would have been okay when she was a baby,” says Caitriona.

Unfortunately, there were no crystal balls available, which meant that Amy’s birth and early years were full of challenge and uncertainty.

Amy is the eldest of Caitriona and Shay Sheridan’s four daughters: Amy (10), Lucy (eight), Sally (six) and Kelly (three). The couple farm and run a landscaping business near Dunleer in Co Louth.

It has been a tough year for the Sheridans, but they are thankful that everything has gone so well.

While Amy is still on crutches after her operation, she is looking forward to getting off them and back to playing gaelic football and camogie – the sports she loves.

Amy was born in August 2004. Regular scans were done during the pregnancy, but they didn’t show up any abnormality in Amy’s leg.

“Looking back we say thank God we didn’t know, because it would have been an awful worry for us,” says Caitriona.

Panic stations

At the birth, Caitriona recalls asking the midwife if the baby had all her fingers and toes.

“I don’t know to this day why I asked that question,” she says.

Caitriona saw immediately that one of her baby’s feet wasn’t right.

“Her right foot was distorted and only had three toes and two of them were stuck together,” she says.

After that there was panic.

“Bells were rung and teams of doctors were brought in to check Amy over. It was an out-of-body kind of experience. You think it’s happening to someone else. It was very frightening that doctors didn’t know what was wrong with her and that they hadn’t seen anything like this before.”

Eventually, the couple were told that Amy’s condition was called fibula hemimelia.

“It’s the Latin for absence of fibula. The fibula is the shorter of the two bones in your leg. It [the calf bone] extends below the tibia bone [the longer bone in the leg] to form part of the ankle joint. Because it was that bone that was missing, it meant that her ankle, foot and toes hadn’t developed properly.”

While it was a very anxious time for the new parents, they were glad to be told that Amy was healthy in every other respect.

“We were heartbroken, of course, that there was something wrong, but we tried to make the most of it when we came home with our new baby.”

An appointment in Our Lady’s Children’s Hospital, Crumlin soon followed.

Facing amputation

“Going to a top Dublin hospital was mind-blowing for us. You never think you’ll be doing something like that, but going there we were thinking: ‘They’ll be able to make everything better’.”

The care Amy has received there and continues to receive is fantastic, Caitriona says. Back then, however, everything was uncertain and they had a difficult decision to make.

“We were given three options. We could leave the leg the way it was and Amy would walk whatever way she was able, or they could try to restore the structure of her foot and operate on the leg frequently to try improve it, or it could be amputated.

“That third option was earth-shattering for us. We had never, ever anticipated hearing this so we were in total shock. To this day we don’t remember driving home that day. We came out of the consultant’s room agreeing that we’d think about it for a few months before making a decision.”

After a lot of thought, Caitriona and Shay felt that the amputation was the best option.

“Because she had so much of a discrepancy between her bad leg and her good leg, she would have needed loads of operations and as hard as it would be, we thought once she had her prosthesis she would lead a normal enough life.”

Amy had the amputation on 16 May 2005, when she was just nine-months-old.

“It’s still difficult remembering that time,” Caitriona says. “You feel guilty that you’re imposing such an operation on your child. Even to this day it’s hard to face the form-signing.”

Amy was in hospital for a week and everything went well.

Legs everywhere

She was then referred to Cappagh Orthopaedic hospital for a prosthesis – an artificial leg – and they’ve been going there regularly ever since.

“The prosthesis has to be replaced at least once a year as she grows. We’ve 10 or 11 legs in the house at this stage – in drawers, in the attic, all over the place.”

Amy’s prosthesis is from the knee down. Her stump, from her knee to her shin, fits into her prosthesis.

While Amy walked at 14 months and there was a respite from the operations for about a year, the Sheridans were told that leg-lengthening operations would have to start at some point.

When she was four she had the first of these to begin lengthening her femur (thigh bone), which was also a bit short when she was born.

“The reason for it,” Caitriona says, “is to try and even things out a bit better, take pressure off the hips and pelvis and to prevent damaging them in later life. This has to be done when a person is growing, hence all this happens in their childhood.

“Limb-lengthening is where you break the bone and then over a period of weeks you stretch the bones apart. The gap that is made between the bones fills in with new bone, so it all becomes one longer bone.”

The procedure involved Amy wearing a special frame for 16 weeks after the operation.

“It was very painful for her and we had to move the pins on the frame every four hours,” says her mother.

Amy is currently going through this leg-lengthening process again and wore a similar frame from January to June this year, this time for 26 weeks.

“The frame stage involves a lot of care and attention as the wounds – the holes in the leg – have to be cleaned regularly. It’s tough on the whole family,” Caitriona adds.

“Day to day I feel so sorry for Amy for what she’s going through, but for the other girls too as they need me as well. They’d want their jumper or something and I’d be saying: ‘I have to do physio with Amy’. It’s difficult to have time for everything. Amy has been through a lot of pain this year, but we’re looking forward to her being much better in the new year.”

In tune with it now

Acceptance of Amy’s condition has come, says Caitriona.

“Even though we were heartbroken, we were adamant that she would have a normal life. It was up to us to do everything we could for her and we encourage her to do what she can.

“She is confident and determined and has great empathy towards other kids who have a disability too. She just gets on with things really and she doesn’t hide her special leg, as we call it.

“We’ve never done that. All along we’ve been very open about it and been glad to talk to other parents whose children have been born with this condition too.

“We don’t know what the teen years will bring, but so far she is doing well and we are really in tune with it now. We are looking forward to going on a family holiday in 2015 when she is over the operation. We are lucky that the medical teams looking after Amy in both Crumlin and Cappagh are fantastic and that we have great family support – we wouldn’t manage without it.”

Getting support was a challenge

Getting financial support to help care for Amy hasn’t been easy, however.

“Only for the Citizens Advice Bureau I don’t know what I’d have done as I didn’t get much information anywhere else,” Caitriona says.

“The big worry was getting a medical card as the prostheses can cost thousands. Getting that took almost four years. We could have 10 hospital appointments every year around the prosthesis with measurements and fittings and so on, so it’s a huge relief to have the security of knowing that when you go up to Cappagh you’ll be able to get the leg made.

“Life is stressful enough for parents in this situation without them having that kind of worry. You’d find the money if it was a once-off situation, of course, but it would be very difficult to keep coming up with it over and over again.

“The Domiciliary Care Allowance is there for parents of children with a severe disability, too, which can help a lot.”

Fundraising for Crumlin

Shay Sheridan, Amy’s dad, has been involved with the Tara Dawn Run charity since 2007.

The family run, which takes place in June each year, was started initially by Shay and his friend James Gibbons to raise money for Our Lady of Lourdes Hospital in Drogheda’s Neo Natal Unit after James and his wife Lisa’s premature baby girl, Kate, had received great care there.

In 2009 the run’s proceeds were donated to Our Lady’s Children’s Hospital, Crumlin because of Amy’s links there and in gratitude for the work done for her and other children like her.

See www.taradawnrun.ie for more information about this family event. CL

A word from Amy

Amy is asking Santa for a horse riding helmet and gear this Christmas.

She feels grateful for her special leg, she says, and that she doesn’t have to use a wheelchair. If she has a bad day (which isn’t very often) she reminds herself of that and knows how lucky she is to be so well.

“I love being outside, playing camogie, football, running and swimming,” she says, “and riding horses now too, and working on the farm with Daddy.”

Amy would like to be a prosthesis maker or a hairdresser when she grows up.