Help very sick Leila overcome rare MECOM disorder.

I’m turning to the kindness of the community to help support my sister Stacey and her partner Steve, whose precious 11-month old daughter Leila faces a number of significant health challenges related to a bone marrow failure associated with a rare MECOM gene mutation.

When Stacey was five months pregnant, she went in for a routine anomaly scan. That’s when concerns arose about her baby’s chin size and the narrowing of one of her heart’s arteries. Stacey was referred to Holles Street Maternity Hospital for further investigation, where doctors confirmed that the baby’s chin looked small. She and her partner were told that a recessed chin was an indicator of Edwards Syndrome, a usually fatal chromosomal condition also known as Trisomy 18 associated with physical abnormalities. Doctors suggested terminating the pregnancy.

Stacey and Steve were not willing to consider abortion as an option. They opted to continue with the pregnancy.

Later tests revealed a possible cleft palate associated with Pierre Robin Sequence, a genetic disorder that causes abnormalities in the chin, jaw, tongue, and mouth that can cause airway restrictions.

Stacey and Steve kept pushing on. At 38 weeks, she gave birth to little Leila at Holles Street, where doctors confirmed she had Pierre Robin Sequence. She was immediately brought to the NICU for monitoring and issues with feeding due to her cleft palate.

When she was one day old, doctors discovered Leila had a low platelet count, causing her to require platelet transfusions.

This was the beginning of a long medical journey that has followed Leila through her short life so far on Earth. She hasn’t even hit her first birthday and she has already had five surgeries and an even greater number of treatments for a host of issues ranging from a cleft palate and obstructive sleep apnea to a bone marrow disorder.

You can keep up-to-date on Leila’s journey HERE.

Eventually, Leila’s bone marrow failed completely and she was not making any platelets, haemoglobin, or neutrophils. She was diagnosed with bone marrow failure caused by a mutation in her MECOM gene and referred to a bone marrow specialist in Temple Street Children’s Hospital, where Stacey was told Leila required a bone marrow transplant.

Hope for Leila
There is hope for Leila in a bone marrow transplant. Doctors found a match for her who agreed to participate even in the midst of the global COVID-19 pandemic.

Leila went back to the hospital on June 7 to begin chemotherapy treatments to prepare for her transplant. She will receive the donor’s bone marrow on June 15. To protect her, she will be in isolation for six weeks in the hospital.

Due to COVID-19, only one parent is allowed into the hospital at a time.

During her year-long recovery, Leila will have to travel to Dublin from our little village of Enniscrone twice a week for monitoring to ensure that the new bone marrow is working correctly and for signs of rejection.

Leila is a very sick little girl who has already been through so much in her short life. She’s barely a year old and has a long, tough journey ahead of her.

Still, we maintain hope. If all goes well after a year-long journey, her new bone marrow will produce healthy new cells.

We cling to the hope that the bone marrow transplant will be the start of a life in which Leila can grow into a happy, healthy little girl who no longer needs to spend her life in hospital. She will be able to play with her siblings without fear of her getting hurt and possible bleeding due to low platelets.

Leila is a bright, headstrong fighter. We believe she has the grit to overcome the obstacles she faces and have a wonderful life ahead.

Financial challenges
Of course, along with the burden of worry and pain that comes with caring for a sick child, there are also huge financial challenges.

I’m here today as an advocate for Stacey and Steve asking for support to help ease this burden.

Stacey has not worked since she went on maternity leave and Steve had to take an extended leave from his job as a caregiver. While we are thankful that the costs of Leila’s treatments are covered, what is not covered is the cost of travel as they go back and forth on a three-hour drive to hospitals in Dublin in their 2006 car. Their old car needs maintenance and Stacey has accrued nearly 1000 euro of garage bills. It’s clear that they need a more reliable car for the back and forth to the hospital. This is before the cost of parking, food, and accommodations.

Because Stacey and Steve are currently unable to work due to caring for Leila, a bank loan is not an option.

I aim to use this campaign to raise 10,000 Euro to help Stacey and Steve pay for their day-to-day expenses including travel to and from the hospital as Leila undergoes treatments. If there is a little leftover it will go towards upgrading her car to something a little more reliable and economical.

Love Our Leila
Stacey said that ever since Leila was born, “endless amounts of strangers have kept her alive through their blood and platelet donations. Now a total stranger is going into surgery to donate bone marrow for her. These people are our heroes.”

On her behalf, I’m hoping to identify more heroes who can help this beautiful family and their little girl.

I’m turning to generous individuals and organizations to shower Leila and her family with love and hope for full healing. I invite you to support my campaign with a donation of any size.

If you care about our cause but can’t afford to donate right now, you can still help! Please share this campaign page on Facebook, Instagram, and your other social media pages so more “heroes” have a chance to step up and help Leila.

I thank you in advance for reading our story and joining us to bring hope and healing to Leila and her family!

Kind regards,
Trevor on behalf of Hughes and McDermott family.


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Organizer and beneficiary

Trevor Hughes 
Stacey Hughes 
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