Running Debra’s Mini Marathon to remember Lola

Lola’s parents were told that she had the severest form of EB and would live for only nine to 12 months. She died in November at seven months and one day old.

Running Debra’s Mini Marathon to remember Lola

JUST two days ago, María Monzón Rosique and her partner Barry Flynn celebrated the first anniversary of the birth of their daughter Lola.

The couple’s precious only child died in November of a rare form of butterfly skin disease EB (epidermolysis bullosa).

Originally from Spain and now living in Trim, María will run in the VHI Women’s Mini Marathon on June 5 — she’s urging women nationwide to join the Debra Ireland team to help people with the painful skin condition that causes skin layers and internal body linings to blister and wound at slightest touch.

“Lola was one in a million to us. EB is a rare disease and only 5% of those who have it get the severe junctional form of EB that she was born with,” says former TV producer María.

“Lola had internal blisters on her airways and digestive system. She struggled with breathing and feeding but despite [this] she was a happy, smiling baby. We have lovely memories of our time with her.”

María’s pregnancy was normal but when Lola was born, her parents knew immediately something was wrong.

“The skin on her fingers was peeling. I was still recovering when the midwife said it could be EB but they couldn’t confirm anything.”

The devastating diagnosis arrived weeks later.

“We were told Lola had the severest form of EB and would live for only nine to 12 months. She died in November at seven months and one day old.

“Lola taught us so much. Consultants said she was pain-free but she went through a lot, yet was so full of life. Now we don’t wait until tomorrow to do things — we tell each other how important we are to each other.

“We concentrated a lifetime into those seven months. Lola was born on April 26 so on the 26th of every month we celebrate her birthday, with cake, candles and balloons.

"Because we knew the diagnosis, we focused on what was important and created as many memories with her as we could,” says María.

Last month, Meath-based friends and neighbours rallied around the young couple, forming a 53-strong team of runners to participate in Debra Ireland’s Wicklow Mountains Challenge, raising €15,000 for EB.

“We ran in Lola’s name as ‘Team Lola’ — in a way she’s still with us,” says María.

She and Barry hope an even bigger ‘Team Lola’ will run for Debra Ireland on June 5.

More info or to register for Debra’s Mini Marathon team: visit www.debraireland.org or call 01-4126924.

FACT FILE

* EB: severe rare genetic skin-blistering disorder, affects 300 people in Ireland.

* No known cure. Research ongoing into better treatments and possible cures.

* Leinster rugby’s charity partner, Debra Ireland, is asking volunteers to sign-up for the women’s mini-marathon on June 5. Volunteers could win a trip to Leinster’s first away game of Guinness Pro 12 season, including four-star hotel accommodation and private jet trip with the team.

More in this section

img MPU

#BreakTheBias

Join our host Irish Examiner Life/Style Editor, Esther McCarthy with guests Caroline Casey, Emer O'Neill, Edel Coffey and Dr. Tara Shine as we make a call to action for accelerating women's equality.

ieFood pic
ieFood Logo

In the Kitchen with

 Video Series

Join Colm O'Gorman in his kitchen as he makes flatbreads in minutes and crispy air fryer chicken. Explore why he thinks chilli is the spice of life, and find out why his 50-year-old food mixer is his most important piece of kitchen equipment.

Puzzles logo
IE-logo

Puzzles hub

Visit our brain gym where you will find simple and cryptic crosswords, sudoku puzzles and much more. Updated at midnight every day. PS ... We would love to hear your feedback on the section right HERE.

Lifestyle
Newsletter

The best food, health, entertainment and lifestyle content from the Irish Examiner, direct to your inbox.

Sign up