By Katy Gagnon
A fund-raiser is being held to raise money for a Bayside infant suffering from an unknown genetic disease.
The June 1 event at the Irish American Center in Mineola, L.I., will feature performances by Irish bands such as The Shannon Breeze, Andy Cooney and Tommy Mulvihill. All money from the fund-raiser will go to the Emma Coen Trust, a fund that will help alleviate some of Emma's staggering medical costs for her parents, Bernadette and Billy Coen.
Bernadette Coen said she was surprised by the outpouring of support so far. “People are excellent. They'll just come out and say, 'I'll do this.' “
When Emma was born last May, she was her parent's “little miracle baby.” Not only was she their first daughter, but she was also a welcomed blessing for her Irish immigrant parents, who had already lost their 6-month old son Brian to a rare genetic disorder in 2002.
For four weeks, Emma lived a healthy life. Around this time, Emma started to cry more often. Her mother thought it was acid reflux. Her parents and doctors tried various treatments for colic. At seven weeks, Emma's condition worsened and her parents brought her to the emergency room.
Then her parents learned the worst: Emma's brain was shrinking. She was suffering from the same genetic disease that her brother Brian suffered from five years earlier.
The exact disease that has afflicted Emma and her brother is unknown. It might be a disorder of the mitochondia metabolism. Emma's DNA is still being tested. Some doctors believe it is a rare genetic condition caused by the combination of her parents' genes.
“It's not rare for me because this is my second child with the same thing,” Bernadette Coen said.
Since Emma became ill, she has been through a battery of medical tests, including lumbar punctures and nerve biopsies — the kind of tests that would make even the most courageous adults flinch.
The Coens use an insurance plan they pay for out of pocket to cover the majority of Emma's bills. But every time they go out of the network for a second opinion, they must pay the full fees. The family is surviving on Billy Coen's living as a salesman in construction.
“As a parent, you don't even think twice about paying for it,” Bernie Coen said. “It's not even a question.”
Today, Emma lives at home with her family. She takes three different medications to control her seizures. While her husband is at work, Bernadette stays at home to care for Emma and her two brothers, Liam, 9, and Declan, 4. Emma can never be left alone and rarely leaves the house. To help out nurses from St. Mary's Hospital for Children's home care program come every day.
Emma used to kick her feet and throw her arms, but now she can barely move. When she is awake, her big brown eyes are opened wide, but it is questionable whether Emma's brain is really registering what she is seeing.
But when she sleeps, her mother said, she is beautiful.
Reach reporter Katy Gagnon by e-mail at kgagnon@timesledger.com or by phone at 718-229-0300 Ext 174.
