Ten months after they learned that their daughter Maggie, then just four years old, would not survive her childhood, her shattered parents suffered another devastating blow.
They were told that the same degenerative disease, Tay-Sachs disease, would also rob them of their son Billy, then four.
In 2018, life for Kelly Rory McElligott, both 35, felt perfect.
They both had jobs they loved, a house on one of the most beautiful streets in Geelong, as well as one of their three children, Maggie, six, Billy, five, and Alice, three.
Everything was great except for one major concern. Maggie’s speech and walking ability decreased. She was already diagnosed with a genetic condition called microdeletion syndrome when she was three, meaning doctors expected delays in reaching milestones.
But geneticists said this pre-existing disease didn’t explain her new symptoms.
Kelly, 35, and Rory McElligott, 35, and their kids Maggie, six, Billy, five, and Alice, three
In April 2019, a test at the Royal Children Hospital in Melbourne revealed that Maggie had another rare genetic condition called Tay-Sachs disease.
The McElligotts were told that their daughter would gradually lose her skills, get sicker and die in late childhood.
“You go in and get your child’s death warrant,” Ms. McElligott told Daily Mail Australia.
“How do you handle that?”
“It’s so terrible to happen to someone, but it happens to your five-year-old daughter.”
“I felt so isolated. You think to yourself “why us? Why is something terrible happening to our beautiful girl? ‘
Siblings Maggie and Billy (shown together) have both been diagnosed with the fatal rare genetic condition of Tay-Sachs disease
Tay-Sachs syndrome means that her daughter has a defective gene, which destroys the nerve cells in the brain and spinal cord.
Those with the syndrome rarely celebrate their 15th birthday.
But before that, they lose their ability to walk or go to the toilet themselves. Eventually, they lose their ability to eat, have constant attacks of breathing, and slip into a vegetative state.
In May, Maggie suffered seizures, which evolved into whole-body attacks three months later.
She fell to the floor convulsing, making her parents feel guilty whenever they couldn’t accommodate her.
By the end of the year, just as they began to adjust to living with Maggie’s symptoms, Billy’s teachers expressed concern about his progress in school.
The McElligotts knew that all of their children were 25% more likely to have Tay-Sachs syndrome, so they had both Billy and Alice tested.
On February 13, the McElligotts visited their geneticist in Geelong, where they received a second blow. Billy has the same condition as his older sister. Alice was clear.
“It destroyed my soul,” said Mrs. McElligott.
Ms McElligott said Maggie loved ‘running around’ and got frustrated with losing her running ability
Billy has become a bit clumsy, but he has yet to experience a dramatic decline in his abilities
“Before we went [to the office] we both thought he had it. ‘
“When we went in, I couldn’t lift every leg. It was as if my intuition told me not to go in there.
“Even if we had a feeling, just hope. We felt we could deal with Maggie’s grief knowing we have two healthy children.
“When I knew Billy, who is a beautiful boy, so full of life, would experience the same as Maggie, it was terrible.
Having come to terms with the shock, the McElligotts now focus on enjoying the time spent with their children – taking them as they come every day.
Maggie completely lost her ability to walk in March and can no longer go to the toilet or talk independently.
The family fears that her disease is progressing much faster than they had hoped.
Although Billy has become a bit clumsy, the family has yet to see his abilities drop dramatically.
The McElligotts have paid their attention to taking each day as it comes and enjoying the time they have left with their children
Although Alice does not have the condition, she carries the altered HEXA gene that causes the disease.
With modifications to the car needed to accommodate their children’s wheelchairs, the family has made the uncomfortable decision to GoFundMe page to help cover costs.
Ms. McElligott said they have received overwhelming support from friends, family and strangers.
“There are simply no words. It’s crazy and it’s incredible and it’s overwhelming, ”she said.
“Photographers have made contact and said they would like to take pictures of our family.
“People helped by just being there.”
The family will eventually have to renovate their home to allow access to the driveway.
Ms. McElligott, who works for the Justice Department, has cut her hours of caring for Maggie at home while her husband continues to work as a teacher.
Alice (right) doesn’t have the condition like her siblings (left) but she carries the gene that causes Tay-Sachs disease
Both Maggie and Billy are still in school, but will eventually be withdrawn.
The time frame of when they get worse varies from days to years, leaving the family in a troubled state.
Despite their hardships, they feel “incredibly happy” with their three beautiful children and feel that the tragedy has allowed them to see kindness in the world they otherwise would not have known existed.
First you ask “why you?” “Ms McElligott said.
“But then you realize, why don’t we? There is so much adversity in the world that affects so many people.
“All we can see is the kindness and love and support, despite the fact that we know we have two children who will die in the coming years.
“I don’t live in years anymore, I just live from day to day trying to enjoy time with family and friends. It’s fun to live simpler and in some ways don’t plan for the future.
“You should bring the little bit of beauty you get every day.”
WHAT IS TAY-SACHS DISEASE?
- Tay-Sachs disease (TSD) is a genetic disorder that affects the nervous system.
- To develop TSD, a child must inherit an altered HEXA gene copy from both parents. This means that both parents must be genetic carriers of TSD to have a child with the condition.
- Symptoms usually first appear at around six months of age in previously healthy babies and include movement problems – loss of the ability to smile, reach out, hold objects, crawl, turn or sit upright and hearing impairment exaggerated responses to loud sounds
- Life expectancy for children with TSD is about five years.
- It gets progressively worse over time.
- There is currently no effective treatment.
- TSD is more commonly seen in people of Ashkenazi Jewish or French Canadian descent.