Home Australia Heartbreaking moment as a mother discovered her daughter Jessica O’Garey had died after a lifelong battle with the incurable disorder nemaline myopathy.

Heartbreaking moment as a mother discovered her daughter Jessica O’Garey had died after a lifelong battle with the incurable disorder nemaline myopathy.

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Heartbroken mother Melissa Waters (right) recalled the heartbreaking moment she found her daughter, Jessica O'Garey (left), dead in her bed after suffering from an illness she was first diagnosed with when she was two years old.

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 their shared home in Darwin on February 9, just hours after cheering on her younger brother at a rugby match.

After not hearing from her the next day, Jessica’s mother, Melissa Waters, arrived home on February 11 to find her beloved daughter “already gone.”

He had been battling nemaline myopathy, an incurable disorder that severely weakens the musculoskeletal system, since he was first diagnosed with the disease when he was just two years old.

The disorder prevented Jessica from pursuing physically demanding passions such as sports and nursing, but it did not prevent her from living a full life.

Ms Waters told Daily Mail Australia that Jessica continued to strive to achieve higher and higher achievements while also being a loving friend and family member.

“She lived life on her own terms and in her own way,” he said.

Heartbroken mother Melissa Waters (right) recalled the heartbreaking moment she found her daughter, Jessica O'Garey (left), dead in her bed after suffering from an illness she was first diagnosed with when she was two years old.

Heartbroken mother Melissa Waters (right) recalled the heartbreaking moment she found her daughter, Jessica O’Garey (left), dead in her bed after suffering from an illness she was first diagnosed with when she was two years old. .

Waters recalled the heartbreaking moment he walked into Jessica’s bedroom and found her dead.

“I just reached out to check it out because I couldn’t reach her and her siblings hadn’t heard from her either, which was really unusual,” he said.

‘On Sunday, when I picked him up again, (his brothers) said ‘we should go check on him’.’

Panic began to set in after she arrived home and discovered that Jessica’s housemates had also not heard from her since Friday night.

“I went up the seven stairs to his room twice at a time and upon entering his room he was clearly already gone and had been for a while.”

Struck with pain, Mrs Waters could only scream for help and lie down next to her daughter before emergency services arrived to take her body away.

Jessica, 24, died in her sleep on February 9, just hours after watching her brother's rugby match, which she attended weekly.

Jessica, 24, died in her sleep on February 9, just hours after watching her brother's rugby match, which she attended weekly.

Jessica, 24, died in her sleep on February 9, just hours after watching her brother’s rugby match, which she attended weekly.

He revealed that Jessica’s health had worsened in the six months before her death and that he felt her doctors had not done enough to keep her healthy.

“I feel like medical help has let her down a lot over the last few years,” Mrs. Waters said.

‘She knew something was wrong for the last six to 12 months. She kept telling me “Mom, something is wrong.”

Jessica was remembered as a woman who cared deeply about her friends and family and was almost always seen with a smile on her face.

“She was the person a lot of people went to for advice and she loved listening to people’s problems and giving her opinion,” family friend Andrew Lamberton said as he gave a eulogy.

‘She continued to give a lot of love to the people she loved and looked forward to a bright future ahead.

“It is with great regret that we will continue our life’s journey without her, but she will always fill a large part of our hearts.”

Jessica had battled nemaline myopathy, an incurable disorder that severely weakens the musculoskeletal system, since her diagnosis as a child.

Jessica had battled nemaline myopathy, an incurable disorder that severely weakens the musculoskeletal system, since her diagnosis as a child.

Jessica had battled nemaline myopathy, an incurable disorder that severely weakens the musculoskeletal system, since her diagnosis as a child.

1709240058 436 Heartbreaking moment as a mother discovered her daughter Jessica OGarey

1709240058 436 Heartbreaking moment as a mother discovered her daughter Jessica OGarey

Ms Waters went to Jessica’s shared house to check on her and found that she had “clearly already left”.

Jessica spent much of her life under hospital care as the disease affected the health of her heart, breathing and skeletal structure.

He went under the knife at the age of 16 to fuse his spine after developing severe scoliosis which, in its worst stage, bent his spine at an 86-degree angle.

However, Jessica graduated with an ATAR of around 80 despite spending most of her final two years of high school confined to the hospital, placing her in the top 20 percent of students, and her school awarded him the “Student of the Year” award.

Waters said it was just one of many examples of how her daughter went above and beyond what was expected of her because of the disorder.

Among his catalog of achievements is climbing the 232-metre-high Mount Maunganui during a family holiday in New Zealand despite having difficulty walking.

“I was determined, so we went up bloody Mount Maunganui,” Mrs Waters said.

‘She had to stop several times along the way… but she made it to the top and was very proud of herself.

“It knocked her out for six days, she was bedridden for a couple of days afterward, but she was determined to do it and she did it.”

The pride and excitement on Jessica’s face as she reached the top was “just the way she was, she wouldn’t let anything be off limits.”

He also managed to work full-time at a law firm while studying to enter the profession in the final months of his life.

Waters said she wanted to work toward becoming a coroner to “speak for those who can no longer speak for themselves.”

Jessica was also remembered as an avid sports fan even though her disorder prevented her from playing sports since she was 10 years old.

One of her most profound moments was meeting the St George Illawarra Dragons netball team while she was in Year 11 as part of her Make a Wish.

Jessica’s health had declined to the point that she was unable to undergo surgery at that time, but she still impressed the players with her knowledge of the game, who urged her to begin training, which she did for a short period of time. time.

She was also a stalwart of the Brisbane Lions AFL club like her mother and followed in her brothers’ footsteps to pursue basketball, rugby and American football.

Jessica still lived a full life despite the horrible illness that prevented her from playing sports or pursuing nursing.

Jessica still lived a full life despite the horrible illness that prevented her from playing sports or pursuing nursing.

Jessica still lived a full life despite the horrible illness that prevented her from playing sports or pursuing nursing.

Parents and those involved with Jessica’s siblings’ sports teams reached out to the grieving mother after her death to express their condolences.

Jessica watched and cheered on every game she could attend and was well known to other spectators.

Players on both her brother’s rugby team and their opponents wore black armbands and held a minute’s silence to pay tribute to Jessica at the match that followed her death.

His other brother’s basketball team also wore black armbands the following week.

Waters hopes her daughter’s untimely death will shed light on invisible disabilities after she was reprimanded for wearing a disability sticker on her car.

“Big men used to abuse her for using handicapped parking, so she didn’t use it anymore,” he said.

‘Disability comes in different ways and just because someone looks like a pretty girl doesn’t mean they can’t be disabled.

“If these people had actually seen her get out of the car, or just seen her take five steps, they would have seen that she deserved it more.”

He also praised the work of A foundation for developing strengthan organization seeking a cure for nemaline myopathy.

TO GoFundMe created to help support Jessica’s family has raised more than $6,900.

What is nemaline myopathy?

This rare disorder causes rod-like or thread-like materials in the musculoskeletal system, severely weakening them.

Muscle weakness tends to be worse in the face, neck, pelvis, shoulders, and upper arms and legs.

Newborns and children are more likely to be diagnosed, although it is also diagnosed in adults, less frequently.

It is diagnosed in approximately one in every 50,000 births.

Those suffering from the disease are urged to seek medical advice before attempting to have a child, as it is transmitted genetically.

The severity of the disorder varies depending on when it takes effect.

Some can live their entire lives with the disease, while other newborns die in just a few months.

There is no known cure.

Source: Cleveland Clinic, National Organization for Rare Diseases

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