Community Corner

Mayor's Proclamation Raises Awareness of 4-Year-Old Urbandale Boy's Disease

Sept. 18 is Pitt Hopkins Syndrome Day. The rare disease affects only about 250 people worldwide, including Nolen Parkin of Urbandale.

Sept.18 is Pitt Hopkins Syndrome Day in Urbandale under a proclamation signed by Mayor Bob Andeweg to raise awareness of the rare genetic disease affecting 4-year-old Nolen Parkin.

Pitt Hopkins syndrome, which affects only about 250 people worldwide, is characterized by intellectual disability and developmental delay which range from moderate to severe, breathing problems, recurrent seizures (epilepsy), and distinctive facial features, according to the National Institutes for Health.

Pitt Hopkins Syndrome Day is being observed internationally for the first time this year.

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Nolen’s mom, Kelly, emailed Andeweg about the observance “and within 10 minutes, he got back to us,” the Des Moines Register reports. “I was impressed.”

Nolen and his fraternal twin brother were born in 2009. When he was about 5 months old, the discrepancy in the twins’ development could no longer be ignored, according to the “Just Say Nolen” page on Facebook.

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The first pediatrician the family consulted was dismissive, but by the time Nolen was 1, he still needed support to sit and was not babbling as children his age usually did. His parents switched pediatricians, who referred them to a geneticist, but it still took more than two years for a diagnosis about a year ago.

Despite the developmental delays, children with Pitt Hopkins “are known for their happy demeanors,” according to the Facebook page, “and Nolen is no exception.”

His parents said the international support group, which raised about $500,000 in about two years, has given them hope.

Kelly Parkin told The Register she and other parents are encouraged by recent research in which the symptoms and other genetic abnormalities have been reversed, and they’ve raised a half-million dollars in less than two years to help find a cure for Pitt Hopkins.

Because Pitt Hopkins is so rare, little attention has been given to it by the federal government and pharmaceutical companies, she said.

At least one other Iowa youth, 8-year-old Ian Fletcher of Bedford, has been diagnosed with Pitt Hopkins Syndrome.

ACTION: “Like” the “Just Say Nolen” page on Facebook. | To donate to help find a cure, go to pitthopkins.org.



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