'Jenny lived life to the full': Family's life 'changed forever' after young woman died of sudden adult death syndrome
Lucia Ebb said her family's life changed forever when her 26-year-old niece died suddenly from cardiomyopathy. Eight years on she explains how she is working to spare other families from suffering the same fate.
Jenny O'Riordan - or Jenny Jewel as she was known to her family - died on May 22, 2012, the same day that her father turned 50.
Jenny had been diagnosed with cardiomyopathy two years before her death. Cardiomyopathy is a term used to describe heart muscle disease. The disease has many different forms and leads to an increased risk of heart failure. It's also a cause of Sudden Adult Death Syndrome (SADS), which is what happened to Jenny.
"Jenny lived life to the full. She never let her condition get in the way of anything," Lucia told Independent.ie.
"The day she died she had been online looking up flights to Spain. She had been sitting with her friend Sinead O'Brien planning a holiday and suddenly she closed her eyes and that was it, my beautiful niece was gone."
Lucia said Jenny's death affected the entire family, and her friends and colleagues, but it was especially devastating for her mother Kate, her father Jerry and her brother JJ.
"She was a massive part of all our lives. Life continues, it moves on but you never forget that person. Anytime there's a family event you're always aware that that person is missing.
"I know everybody says that about their daughters or nieces but she really was beautiful. She was the most gorgeous, the kindest, the sweetest... She was so bright and just a bundle of fun. Everyone loved being around her, she always loved a good laugh.
"She had so much to live for. It's unimaginable burying a child - even though she was an adult, you still think of them as children in some way - and burying my niece... it was just so wrong. It's not the right order of things. It's not how it should be," said Lucia.
Lucia volunteers with the Dublin-based chairty CRY (Cardiac Risk in the Young), supporting families that have been affected by cardiomyopathy.
She had been working with Michael Greene, founder and former chairman of CRY, since the late 80s. She had helped him when his young son Peter died suddenly in 1996. When he and his wife Marie started CRY, Lucia did administration work for him.
Lucia said the charity had provided "amazing support" to her family when they lost Jenny and she now continues to provide the same level of support to other families.
"Jenny's death is what drove me and what still drives me to this day," said Lucia. "The reality is that so many people across Ireland are unaware that they could be at risk of sudden death.
"You can't imagine the devastation and heartbreak SADS brings to a family. We want to make sure that we are providing a service to people that is completely free. Nobody will ever be turned away because they can't afford it."
CRY aims to eventually see about 1,500 patients a year but they currently only have enough resources to see approximately 950 patients a year.
"We just don't have the resources to be as big as we want to be. We're entirely dependent on donations and fundraising but we hope to expand," said Lucia.
An estimated 60-80 people aged between the ages of one and 35 years die of SADS every year in Ireland. The disease may occur because of an underlying heart muscle abnormality, electrical disorders or other structural problems with the heart.
In approximately half of the cases, the cause may be inherited. Close relatives may have a one-in-two chance of developing the same condition. Most people affected remain undiagnosed and unaware of the risks to their health, and the possibility they could pass on such conditions to their children.
The charity CRY offers screening services to family for early detection of the disease. They also offer counselling and family support services.
"The best treatment for those potentially at risk includes an expert assessment, access to genetic testing and psychological support and counselling. The CRY Centre in Tallaght is the only clinic in the country that provides a complete service and is free to patients," said Lucia.
"It's good for families to deal with like-minded people, most of us who volunteer for CRY have direct experiences with cardiomyopathy and it can be comforting for the families to get the support from people who've really gone through it. We've a great support network of families.
"My own three boys, Jack, Harry and Max, are patients in the centre so I understand the concerns of the parents walking through the doors. Every story is different but every time I take a call from a bereaved family I understand where they're coming from."
This year the charity hopes to raise some much-needed funds through the VHI Ladies Mini Marathon in July. They're hoping to sign up as many people as possible to jog, walk or run in aid of CRY.
"We are really looking forward to this year's mini marathon and hope to sign up loads of people to participate in aid of CRY. It's always a good day out and it's great seeing people get together for a good cause.
"Anyone who wants to sign up can get in touch with me directly on 01 4525482 or email firstname.lastname@example.org for their sponsorship packs," said Lucia.
The VHI Ladies Mini Marathon takes place on June 3, 2018. Entries are open now.