Heartbreaking moment a mum found her daughter Jessica O’Garey had passed away after lifelong battle against incurable disorder Nemaline Myopathy
A grieving mother has described the heartbreaking moment she found her daughter dead in her bed after bravely battling a debilitating illness all her life.
Jessica O’Garey, 24, died in her sleep at her home in Darwin on February 9, just hours after cheering on her younger brother during a rugby match.
After not hearing from her the next day, Jessica’s mother Melissa Waters arrived at the house on February 11 to find her beloved daughter “already gone.”
She had been struggling with Nemaline Myopathy, an incurable condition that severely weakens the musculoskeletal system, since she was first diagnosed with the disease when she was just two years old.
The disorder prevented Jessica from pursuing physically demanding passions such as sports and nursing, but did not hinder her pursuit of a full life.
Ms Waters told Daily Mail Australia that Jessica continued to push herself to achieve ever higher achievements while being a loving friend and family member.
“She lived life on her own terms and in her own way,” she said.
Heartbroken mother Melissa Waters (right) recalls the heartbreaking moment she found her daughter Jessica O’Garey (left) dead in her bed after suffering from an illness first diagnosed when she was two years old
Mrs Waters recalled the heartbreaking moment she walked into Jessica’s bedroom and found her dead.
“I called to check because I couldn’t get a hold of her and her brothers hadn’t heard from her either, which was very unusual,” she said.
‘When I brought it up again on Sunday, (her brothers) said ‘we have to go check on her’.’
Panic ensued when she arrived at the house and discovered that Jessica’s roommates had also not heard from her since Friday evening.
“I took the seven or so flights of stairs to her room twice in a row and when she walked into her room she was very clearly already gone and had been gone for some time.”
Stricken with grief, Mrs Waters could only scream for help and lie down next to her daughter before emergency services arrived to remove her body.
Jessica, 24, died in her sleep on February 9, just hours after watching her brother’s rugby match, which she attended weekly
She revealed that Jessica’s health had deteriorated in the six months leading up to her death and that she felt her doctors had not done enough to keep her healthy.
“I feel like she has really been let down by medical care over the last few years,” Ms. Waters said.
‘She had known for six to 12 months that something was wrong. She kept telling me, ‘Mom, something is wrong.’
Jessica was remembered as a woman who cared deeply for her friends and family and was almost always seen with a smile on her face.
“She was the person that so many people went to for advice, and she loved listening to people’s problems and giving her opinions,” family friend Andrew Lamberton said as he delivered a eulogy.
“She continued to give so much love to the people she cherished and looked forward to a bright future.
“It is with heavy hearts that we will continue our life’s journey without her, but she will always fill a large part of our hearts.”
Since her diagnosis as a child, Jessica has struggled with Nemaline Myopathy, an incurable condition that severely weakens the musculoskeletal system.
Mrs Waters went to Jessica’s share house to check on her, but found she was ‘clearly already gone’
Jessica spent much of her life in the hospital as the disease affected her heart health, breathing and skeletal structure.
She went under the knife at age 16 to fuse her spine after developing severe scoliosis that, in its worst stages, curved her spine at an 86-degree angle.
Jessica nevertheless graduated with an ATAR of around 80, despite spending most of her last two years of high school in hospital, putting her in the top 20 percent of students, and was named by her school to ‘Student of the Year’.
Ms Waters said this was just one of many examples of her daughter pushing herself far beyond what was expected of her given the condition.
One of her achievements was climbing the 232-metre-high Mount Maunganui during a family holiday to New Zealand, despite difficulty walking.
“She was determined, so we walked up that bloody Maunganui mountain,” Mrs Waters said.
‘She had to stop a few times along the way… but she made it to the top and was so proud of herself.
‘It knocked her for six, she was put to bed for a few days afterwards, but she was determined to do it and she did it.’
The pride and excitement on Jessica’s face upon reaching the top was “exactly how she was, she wouldn’t allow anything to be off limits to her.”
She also managed to work full-time at a law firm while she spent the last months of her life studying to enter the profession.
Ms Waters said she wanted to work towards becoming a coroner to “speak for those who could no longer speak for themselves”.
Jessica was also remembered as an avid sports fanatic, despite her condition preventing her from participating in sports from the age of ten.
One of her more profound moments was meeting the St George Illawarra Dragons netball team in Year 11 as part of her Make a Wish.
Jessica’s health had deteriorated to the point where she could not undergo surgery at the time, but she still impressed the players with her knowledge of the game, who urged her to take up coaching, which she did for a short period.
She was also a stalwart for the Brisbane Lions AFL club, like her mother, and followed in her brothers’ footsteps by following basketball, rugby and American Football.
Jessica still lived a full life, despite the terrible disease that prevented her from playing sports or practicing nursing
Parents and people associated with Jessica’s brothers’ sports teams contacted the grieving mother after her death to offer their condolences.
Jessica watched and cheered at as many games as she could attend and was well known among the other spectators.
Players from both her brother’s rugby team and their opponents wore black armbands and held a minute’s silence to pay their respects to Jessica during the match that followed her death.
Her other brother’s basketball team also wore black armbands the following week.
Mrs Waters hopes her daughter’s untimely death will shine a light on invisible disabilities after she was punished for putting a disability sticker on her car.
“She was abused by big, burly men because she used a handicapped parking spot, so she just didn’t want to use it anymore,” she said.
‘Disability manifests itself in different ways and just because someone looks like a beautiful young girl doesn’t mean they can’t be disabled.
“If these people had actually seen her get out of the car, or seen her take five steps, they would have thought she deserved it more.”
She also praised the work of A foundation for building strengthan organization looking for a cure for Nemaline Myopathy.
a GoFundMe set up to support Jessica’s family has raised more than $6,900.