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The Wibbly Wobblly Wonders group getting ready for the Evening Echo Women's Mini Marathon. The group who meet at the Ballyvolane Shopping Centre, Cork weekly to run and walk, are raising funds for the Down Syndrome Centre, Rainbow Club, Scoil Ciara and Lexie O'Riordan (who are also in the photo). Picture Dan Linehan
The Wibbly Wobblly Wonders group getting ready for the Evening Echo Women's Mini Marathon. The group who meet at the Ballyvolane Shopping Centre, Cork weekly to run and walk, are raising funds for the Down Syndrome Centre, Rainbow Club, Scoil Ciara and Lexie O'Riordan (who are also in the photo). Picture Dan Linehan
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Working wonders for Lexi and others too...

LEXIE O’Riordan is a busy young lady. She has taken time out of her hectic schedule to meet me.

“She’s just had her booster injection,” says Lexie’s mum, Sylvia. “And her blood is low, so she’s had some iron infusions too in order to build up her blood. Every month, she gets Vitamin D straight into a muscle.”

Lexie is expecting a visit from the tooth fairy later. She shows me the gap where her tooth fell out and offers me her little arm to view the site of the injections she got earlier. It’s all better now.

“We have to get ready for the photo shoot this evening for the Evening Echo,” Sylvia reminds Lexie, who is singing a fabulous version of Robbie Williams’ Angel for me.”

The photograph is very important, because the Wibbly Wobbly Wonders group are taking part in this year’s Evening Echo Women’s Mini Marathon for Lexie. Members of the Ballyvolane running and walking club are flying the flag for the Down Syndrome Centre, Cork, Cara Junior School and The Rainbow Club as well.

Lexie, aged six, is a bit of a wonder herself. The little girl is the only person in Ireland with the rare intestinal disorder, Microvillus Inclusive Disease, which doesn’t allow any nutrients to be absorbed by the body. The intestinal wall does not develop and therefore is unable to take in nutrients. She is only one of 50 people worldwide with the condition.

Hollie, Lexie’s older sister, also inherited MIVD. Hollie passed away in 2005, at Christmas, aged just one.

“Lexie will need a small bowel transplant in the future in order to survive,” says Sylvia.

Lexie O'Riordan. Picture Dan Linehan
Lexie O'Riordan. Picture Dan Linehan

The transplant will give Lexie a chance at life that her sister never had.

“Lexie never knew Hollie,” says Sylvia sadly.

“Hollie died from liver failure. Our two girls inherited the rogue gene. Their brother, Charlie, aged nine escaped. He is a great kid, and fiercely protective of his little sister, Lexie. Charlie Skypes her when she is in Dublin at the hospital.”

MIVD hit both O’Riordan sisters.

“The chances of Eddie and I meeting, marrying, and carrying the rogue gene was zillions to one,” says Sylvia. “It had to be a phenomenal co-incidence. But that’s what happened.”

“Hollie came about by IVF,” says Sylvia.

“After five years we were so looking forward to becoming parents. We were thrilled when she was born,” says Sylvia. “Then we were so happy to be expecting again when Charlie came along.”

Sylvia and Eddie worried about the fate of their second baby daughter.

“We were so relieved when Lexie passed the 13 month mark,” says Sylvia.

“It was a sign Lexie would continue to survive and to thrive. But our hearts sank at the thought of having to travel the same road as we had done with Hollie. Premature babies often have watery stools and extended tummies,” says Sylvia. “But after 11 days I knew that Lexie had MIVD, the same as Hollie.”

Sylvia and Eddie did everything in their power to make life easy for their little girl.

“Eddie and I are trained in TPN, Total Parental Nutrition, a nutritional complex that keeps her alive,” says Sylvia.

“Lexie takes nothing by mouth. She has never eaten anything her life. A very odd time she might lick curry sauce from a chip or taste soya sauce from a prawn cracker; but that’s all.”

Caring for Lexie is a full-time job for her parents.

“The process is hugely time-consuming and sterilisation and the right timing are of crucial importance. It is 15 hours a day, seven days a week,” says Sylvia.

“The machine is in Lexie’s bedroom. The room must be sterile, even though Lexie is very ‘girlie’ and she loves to be surrounded by her favourite things.”

Lexie is growing up fast. She loves going to school at Scoil Oilibheir in Ballyvolane.

“I’m going into senior infants,” she says proudly.

Sylvia and Eddie ensure that their little girl has everything in order to thrive and grow strong.

“TPN supplies all Lexie’s nutritional needs, by-passing the digestive system and dripping nutrient solution directly into a vein through central veins via a catheter,” explains Sylvia.

“The complex comes made up and is delivered to us every week.

There are often complications.

“Infection is the worst fear,” says Sylvia.

Arron Rebecca and Jean O’Sullivan. Picture Dan Linehan
Arron Rebecca and Jean O’Sullivan. Picture Dan Linehan

If that happens; a peripheral line has to be used. That is not ideal. It can be hard to get another line into another vein. If Lexie gets dehydrated, the veins shrivel up.

“We travel to Crumlin Children’s Hospital often and more recently to Temple Street. Too much fluid built up in Lexie’s brain. A shunt had to be inserted to drain the fluid. The ophthalmologist noticed the fluid build-up in Lexie’s eye after she had an eye test in the clinic.

“From October to January, Lexie was very sick. Up until March, she was losing all her nutrients out through her stool. It was very hard to get the right balance back in her body again. Often, Lexie’s bottom gets sore when there is too much acid in her system. I can change her and put on double and triple nappies 12 to 14 times a night. The acid could burn her skin in seconds.

“Lexie vomits a lot when the balance is off. She sips water to allow the vomit come up more easily, avoiding damage to the oesophagus. It can be really tricky.”

Is family life compromised?

“Eddie does a lot of overtime at work,” says Sylvia.

“I thought of going back to work myself last October, but Lexie was too ill.

“I am Lexie’s full-time carer, though I’m not recognised as such,” says Sylvia.

“We have four home-helps coming in to the house regularly; the HSE supplies a night nurse, they are like part of our family.”

Lexie has lots of people in her corner.

“She is a little trooper,” says Sylvia. “She knows what she wants.”

Where did her amazing singing voice come from?

“She got her voice from Nan O’Riordan,” says Sylvia.

“And she is the double of my Mam, who is 81. She looks so like her.”

Lexie is the apple of her daddy’s eye.

“She is 100% daddy’s girl,” says Sylvia with a smile.

No doubt daddy, Charlie and Lexie will cheer on the Wibbly Wobbly Wonder running group as they participate in the Evening Echo Women’s Mini Marathon on September 24.

Sylvia said: “We can’t believe the massive support we have from friends and neighbours. It is just amazing. Lexie is local and they all love her.

“I’m a lapsed member of the Wibblies myself; but I’m making a comeback, starting with the couch to 5km.”

Lexie isn’t hanging around.

A girl has things to do before she has her photograph taken.

“I sing Molly Malone for the nurses in Dublin,” says Lexie, giving me the thumbs up.

What is the W sign for?

“The Wibbly Wobblies, silly,” she says, tossing her golden curls.”

Sylvia takes her daughter’s hand in hers.

“You know what? When she wakes up every morning, it’s all worth it.”

Ashley, Cillian, Zac and Holly O'Keeffe. Picture Dan Linehan
Ashley, Cillian, Zac and Holly O'Keeffe. Picture Dan Linehan

THE RAINBOW CLUB

Janice Keating Murray is a member of the Wibbly Wobbly Wonders and volunteers at The Rainbow Club, which provides much-needed support for parents and families of children with Autism Spectrum Disorder (ASD).

“200 of us mums are taking part in the mini-marathon,” she says. “The Rainbow Club hosts 296 children weekly in a happy, social environment. The social groups, music, drama, speech and language therapy together with Occupational Therapy, help the youngsters to be themselves. The children, from two years up, learn to share with others and make pals.

“My son, Callum who is eight and a half, loves the Rainbow Club. It is like vibrant youth club, run by enthusiastic volunteers. It is a great set-up and we think taking part in the mini-marathon for the Rainbow Club is great too!”


SCOIL CARA

Jill Looney, a member of the Parents’ Association of Scoil Cara, Mayfield, is looking forward to the marathon too.

“Scoil Cara is really grateful to the Wibbly Wobbly Wondera,” says Jill.

“The Parents’ Association have really taken over the fitness in the school this year. Sponsorship cards are doing the rounds and the support of the Wibbly Wobblies and The Rainbow Club has encouraged lots of parents to take part in the mini-marathon this year. The community spirit and the community involvement is fantastic.

The school suffered a fire earlier in the year, so the efforts of all the parents taking part, whether they are running, walking, or crawling, is really worthwhile.”


HOW TO GET INVOLVED

THE Evening Echo Women’s Mini Marathon race office will be open in Debenhams on Saturday, September 16, 10am to 4pm. Monday, Tuesday, Wednesday 10am to 4pm and Thursday, 10am to 7pm. There is a €12 registration charge at the race office, it costs €12 to register online, plus handling fee P+P of €1.50 at www.eveningecho.ie/registration You can also register on the day for €15, if spaces are still available, as there is an 8,000 place cap on the race this year. There is also a new medal and the race will be chipped for the first time.

Do you have a story about why you are running the marathon? Email features@eecho.ie