PROVIDENCE — Ten-year-old Abigail MacCurtain lives with Leigh’s disease, a rare neurological disorder that affects the central nervous system. Symptoms can include loss of motor control, respiratory failure and cognitive impairment.
“Imagine a major city with 1/2 its power plant shut down,” is how the Friends of Abby Mac Facebook page describes it. “At best, this would cause a major blackout. Now imagine your body working only to one half — the brain is impaired, vision is dim, you are weak and your muscles are too fatigued to walk or crawl.”
Now imagine the possible impact of the pandemic.
“Since the beginning, we've been concerned about Abby coming down with COVID,” said her father, Greg MacCurtain.
A few weeks ago, Abby went on a camping trip.
After returning, “some people tested positive,” said Heidi MacCurtain, her mother. Abby showed no symptoms, but a test in early November revealed she had contracted coronavirus disease. With her underlying conditions, she was at significant risk of hospitalization or death.
"It was really scary to us because we didn't know how it was going to affect her," said Abby's father. "We heard that it impacts your respiratory system. I don't think her body could take that."
The MacCurtains, who live in Plymouth, Mass., immediately consulted with Abby’s doctors at Mass. General Hospital in Boston — a team that includes a pulmonologist, immunologist and neurologist. The neurologist knew about a study of monoclonal antibody therapy for children led by Dr. Michael Koster and a team at Hasbro Children’s Hospital.
Less than two days after testing positive, Abby was at Hasbro Children’s, receiving an infusion. She was not admitted, only seen as an outpatient.
“The next day, she did sleep a lot,” her mother said.
That was a Saturday.
By the following Monday, Abby, who uses a wheelchair, felt well enough to resume her studies at South Shore Educational Collaborative in Hingham, Massachusetts — virtually, at first.
'Safe and effective'
In an interview on Friday, Koster discussed monoclonal antibody therapy for children. The study has ended, and with emergency use authorization recently granted by the Food and Drug Administration, the treatment is now available for children from birth to age 11. According to Koster, Hasbro Children’s is one of the few centers in the U.S. currently offering it.
“What we have found is it’s safe and it's effective,” Koster said. “Abigail is certainly an example of rapid improvement and staying out of the hospital afterwards.”
Word of what’s available in Rhode Island for at-risk and COVID-sick children anywhere has spread, according to Koster.
“We infused two children yesterday, four today, some from New Hampshire, New York, Massachusetts,” the physician said. “So we're really the only hospital, hospital system, in the region that's offering monoclonal antibodies for this group … [of] high-risk children.”
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Abby’s recovery proceeded swiftly.
“Abby is all clear to return to school tomorrow!!” stated a Nov. 14 Friends of Abby Mac Facebook page post illustrated with the girl giving a thumbs-up. “She is super excited. Check out comments to see Abby dancing along to the feelings song. Thank you for all the prayers and positive thoughts.”
On its web page, the National Institute of Neurological Disorders and Stroke, a division of the National Institutes of Health, describes the prognosis for individuals born with Leigh’s disease. Some die not long after birth.
“Those with partial deficiencies have a better prognosis, and may live to be 6 or 7 years of age,” the institute declares. “Some have survived to their mid-teenage years.”
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Even before her treatment at Hasbro Children’s, Abby had beaten the odds.
Her monoclonal therapy made those odds even better.
“It's worth the risk to give yourself hope, to get your child anything they can to live their best life,” Heidi said. “This was a no-brainer. This is what Abby needed in order to be her healthiest.”
This article originally appeared on The Providence Journal: Hasbro Children's COVID monoclonal antibody therapy for at-risk kids