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'It's 24/7': The impact of caregiver shortages on twins with rare genetic disorder

Posted at 12:38 AM, Jun 06, 2024

DE PERE (NBC 26) — Jamie Willett lost her brother Jimmy to a rare genetic disorder this year. The single mother is now struggling to care for her twin boys who have the same disorder.

  • Otis and Arlo have MECP-2 Duplication Syndrome — a genetic disorder that sees only half of affected individuals live past 25, according to the National Library of Medicine
  • Their mother Jamie doesn't work because she is worried about her sons suffering from seizures and respiratory infections — so they're on a "tight budget"
  • Jamie wants to work in her field of social work, but says her sons' abrupt and complex medical issues, which can last over a month, make her unsure of the feasibility of a career in the field
  • She says finding a suitable day care is challenging, and getting child care at home even more challenging
  • Jamie attributes some of her difficulty finding qualified workers to low nurse wages — a concept backed up by the Aging & Disability Resource Center of Brown County, which says "The starting wage for certified nursing assistants (CNAs) is significantly lower than wages offered by non-healthcare sectors, such as fast food and retail."
  • Jamie is raising money to fund research for a cure for MDS — you can donate to that here, or directly to the family here
  • Video shows Jamie playing with Otis and Arlo

(The following is a transcription of the full broadcast story)

A day in the life of Otis, Arlo, and their mom Jamie. We have the story of a single mother struggling to find care for two sons with a rare genetic disorder.

Otis and Arlo have MECP-2 Duplication Syndrome — an extremely rare disorder that sees only half of affected people live past 25.

It claimed the life of Jamie Willet's brother Jimmy this year. He was just 33 years old.

"He, his last half of his life, suffered horrible medical issues, that I wouldn't ever want anyone to have to deal with," Willett said.

Jamie says her boys are non-verbal, and struggle with seizures and respiratory infections.

Their therapist says they're different from most four year olds.

"The boys get physical therapy, operational therapy, and speech therapy here," said Jessica Merchak, CP director of therapy services. "They definitely have delays that we continue to work on."

The boys are on the wait list for the day care here at CP, but their condition doesn't quality for child care under Medicaid, so Jamie has no full-time help.

"I don't know how I'll be able to take care of these boys on my own," Willett said. "There should be more options out there to be able to receive a nurse."

They have two part-time respite nurses — but another issue is low pay for nurses of all qualifications.

A Brown County resource center says a certified nursing assistant will cost someone $30 an hour, but the CNA will see just a fraction of that.

"The starting wage for certified nursing assistants (CNAs) is significantly lower than wages offered by non-healthcare sectors, such as fast food and retail," the ADRC wrote to NBC 26.

"It's going to be really, really hard to find them because no one wants to work for $11 an hour," Willett said.

Jamie says she can't work because she's worried about her sons getting suddenly sick — with no nurse on call.

"It's always weighing heavy on me, of 'what is going to happen next to my boys?' Willett said. "'When are we going to have to go to the hospital again?'"

To help out Otis, Arlo and others with MDS try to find a cure, go to this website.