Ogden toddler claimed by rare nerve disease

Tuesday , April 21, 2015 - 4:30 PM

Standard-Examiner staff

OGDEN — After months of battling gangliosidosis, 2-year-old Zac Horspool died on Saturday.

“Although it was pretty short, he was always happy, always smiling, always wanting to be with somebody,” said his father, Brett E. Horspool.

The family will have a service for Zac on Thursday at 11 a.m. at the Harrisville 6th Ward, 113 Childs Ave.

Doctors diagnosed the toddler with the extremely rare and terminal disease in June.

His parents, Brett and Melissa Horspool, noticed that Zac stopped developing when he was about 1 year old.

After several months and visits with numerous doctors, the Horspools finally had a name to go with the illness.

Gangliosidosis, or GM1 for short, is a degenerative nerve disorder that gradually dismantles nerve cells in the brain and spinal cord. It affects only about 1 in 100,000 to 200,000 infants worldwide. Zac was the first person in Utah to be diagnosed with the disease since 1974.

Because of its rarity, the Horspools frequently needed to explain the rare disease to the doctors during their numerous visits to different hospitals.

Because of his constant care and numerous medical visits, the family accumulated tens of thousands of dollars in medical bills since Zac's diagnosis last summer.

As a result, the Horspools had to move last October to a smaller home in Ogden and gave up their status as a foster home to three little girls.

Yet through most of the ordeal, the family said Zac continued to smile and laugh. He loved to play and wrestle with his older brother Max, who served as his nurturer.

“He was a fun kid,” Brett said, “Always happy, even right up until the time the disease really took over. You can tell he was in a lot of pain, but he still wanted to smile and laugh and jump. He was a happy kid all of his life.”

The Horspool family wanted to thank all of the people who supported them during the process including the medical staff, family and the community.

“That was very helpful in our situation,” Melissa said, “just having the amazing support from the outreach from our family and our friends, even strangers. We didn’t just do this alone. It was nice.”

For parents who may be going through a similar experience, Brett recommends that they not spend their time focusing on the disease itself.

“Live your life to the fullest,” Brett said, “Don’t hold anything back because of the illness and just take it a day at a time.”

The family chronicled their experience on a blog, then on Facebook, posting at least every few days.

While the negative experiences may have been overwhelming, Melissa said she tried to remain positive with the sites, sharing the good times with her son. 

The social media sites helped the family connect with others in the community.

“It was so nice; the support was huge,” Melissa said. “We were able to bounce ideas off of the other families.”

The Horspools hope the blog and Facebook page serve as a resource to help other families who have children with the disease.

For the people who have asked where to send donations for remaining medical expenses and funeral costs, the family said there is still an account set up in Zac's name at GoldenWest Credit Union.

More so, however, Brett asks the public to consider donating to a cure for GM1, gangliosidosis at www.cureGM1.org.

In addition to the funeral, friends may visit with family on Wednesday from 6 p.m. to 8 p.m. at Lindquist's North Ogden Mortuary, 2140 N. Washington Blvd. and Thursday from 9:30 a.m. to 10:30 a.m. at the church.

Contact Jesus Lopez Jr. at 801-625-4239 or jlopez@standard.net. Follow him on Twitter at @jesuslopezSE and like him on Facebook at facebook.com/JesusLopezSE.

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