Isabel Jurado may come to school at Mount Holly Elementary only a day or two each week, but she’s one of the most popular girls in the place.
The kindergarteners cry out, “Hi, Izzy,” as they walk by her, and every staff member stops to squeeze her hand and talk to her.
But Izzy can’t talk back. She cannot return their smiles or make eye contact. Nor can she stand on her own for an extended period of time or feed herself.
Izzy is living with Sanfilippo syndrome, a genetic disease that’s part of a group of diseases called Mucopolysaccharidoses, or MPS. One in 25,000 children is born with MPS and one in 75,000 has MPS-III, or Sanfilippo syndrome.
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On Friday, Izzy’s family and the students at Mount Holly Elementary released dozens of purple balloons to mark International MPS Awareness Day.
“Sanfilippo syndrome takes away the things that you can do,” Izzy’s mother, Leslie Jurado, explained to the children, some of whom remember when Izzy was younger and could still walk and talk, before the disease further limited her abilities.
These days, Izzy requires around-the-clock care. She can only eat pureed foods or what’s given to her through a feeding tube. She takes more than a dozen doses of medication each day and her seizure and movement disorder is so severe that she can’t stop moving, sometimes rocking and shaking violently.
When the Jurados aren’t caring for Izzy and her three siblings, they’re fighting for their daughter and other children like her. They’re part of the campaign in South Carolina to get access to medical marijuana to help with Izzy’s movement disorder.
They also are part of a national fundraising effort and a push for a gene therapy clinical trial to stop the progression of MPS diseases in other children. The same gene therapy has cured animal test subjects of MPS.
For Izzy, though, it is too late for a cure, Leslie Jurado said. No matter how many awareness events they organize or medications Izzy takes, her disease has advanced too far to stop it. Izzy will be 12 years old next week, and most children who have Sanfilippo do not live beyond their mid-teens.
But for now, Jurado said her family is just trying to make the most of the time they have with Izzy, who still has good days where she can laugh and smile.
“She’s very loved, and we’ll do everything and anything that we can to make her happy and comfortable,” Jurado said.
In Izzy’s short life, she’s managed to touch the hearts of untold numbers of people without ever saying a word, said special education teacher and close family friend Kelly Watson, who met Izzy when she was 3 years old.
Once, at an airport, a group of teenagers approached Izzy and Watson and offered to help with her wheelchair and luggage, Watson said. They then emptied their pockets of their dollars and change to give to Izzy to help her.
“I’ve seen grown men moved to tears just by her eyes and her smile,” Watson said.
On Friday, before the balloons were released and the children at Mount Holly Elementary shouted, “Cure MPS,” Jurado thanked them for being friends with Izzy and for accepting that everyone is different. She reminded them to be kind and remember the blessings they have, like walking, talking, playing and feeding themselves – all things that Izzy hasn’t been able to do alone for years.
The color purple should be a reminder of that, she said.
“I want you to think about Isabel and be grateful for all the things that you can do,” she said. “Be grateful in your heart.”