A Sioux City girl has a rare childhood illness that is so unusual and unpredictable

that she cannot be treated in the Siouxland area. She and her parents are traveling

to Boston, MA on November 25 th , where she will be treated by a specialist at the

Boston Children's Hospital.

Cindy Sue Jacobsen is almost 5 years old. She has a rare condition called ROHHAD

Syndrome. It stands Rapid-onset obesity with hypothalamic dysregulation,

hypoventilation and autonomic dysregulation. Children with this condition gain

weight rapidly and cannot properly regulate their breathing. It is a life-threatening

illness that also causes damage to the autonomic nervous system.

Cindy’s mother, Audreya Jacobsen said, “The doctors in Boston are the only people

who work with children who have ROHHAD’s disease. They told us her case was

severe.”

Cindy is going to Boston specifically to see the ROHHAD specialists. These doctors

were referred to her parents from doctors at the Mayo Clinic in Rochester, MN. The

family still travels to the Mayo clinic twice a month where Cindy receives

chemotherapy.

She was recently diagnosed with ROHHAD’s syndrome. It is so rare that less than

200 people in the world have it. This diagnosis follows a previous illness she had

when she was 3 years old. That was PCSK1 Deficiency and with that, came a

Neuroblastoma tumor. On June 27, 2023, doctors operated on the tumor, but they

could not fully remove it because it had fused with her aorta.

The two medical conditions are intertwined, and the ROHHAD condition can lead to

cancer. Because she cannot regulate her breathing all the time, she uses a BiPAP

device to help her.

Friends of the family have set up a GoFundMe page to help pay for travel costs to

and from Boston. The November 25 th trip will be their first to Boston. The fund will

also help offset medical expenses and other needs that Cindy has.