Sarasota mom says government shutdown is preventing son from receiving potentially lifesaving treatment
Shutdown impacting boy's ability to get lifesaving treatment
Sarasota mom says the government shutdown is preventing her son from receiving potentially life saving treatment. Kimberly Kuizon reports.
SARASOTA, Fla. - One Sarasota mother said the government shutdown is now delaying a potentially lifesaving treatment for her son.
Courtesy: Micaela Hill
What we know:
Micaela Hill said her hopes of having her two-year-old treated for a rare genetic disorder continue to lessen with each day the government remains shutdown.
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Micaela Hill is a registered nurse and a mother. She works as the Stoke Coordinator at HCA Florida Sarasota Doctor's Hospital. Hill said her hopes of having her two-year-old treated for a rare genetic disorder continue to lessen with each day the government remains shutdown.
Her two-year-old son, Hudson, is her everything.
"I don’t think people see the bigger picture a lot of times and, for me, he’s my world. This is my big picture and so this has been hard," she told FOX 13.
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Since birth, Hudson has dealt with repeated health issues.
Courtesy: Micaela Hill
"He then got RSV when he was 6 months old. We were in the ICU for the first time then. From there he’s had ear infections, thrush infections," she recalled.
Big picture view:
In August, Hudson was diagnosed with Dock8. It's a very rare immunodeficiency syndrome with only 250 known cases diagnosed worldwide.
"Dock 8 is a protein in our system that helps fight invaders. It's the protein that actually helps go through the skin tissue and into your lung tissue to help fight against invaders like Staph infection. Kids with DOCK 8 don’t have that protein working properly," said Hill.
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Hudson receives IVIG treatments or intravenous Immunoglobulin therapy once a month to help.
A clinical trial bone marrow transplant is the only known cure.
"That bone marrow transplant could really give him a new lease on life and actually be able to get to be about my age. The current bone marrow transplant recipients have made it to about their 30s, but without it, he would be about 11–14, which is his age expectancy," said Hill.
Dig deeper:
Hudson was referred to the NIH or National Institutes of Health in Bethesda, Maryland. His mother was told new referrals are not being accepted due to the government shutdown.
"We got the news on Tuesday that his referral is going to be halted until potentially January, after the holidays and after the government can reopen," said HIll.
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Micaela is on a mission to have her son's story told.
She said every day that passes puts him at higher risk for life-threatening infections and cancer.
"It's a lot of red tape we have to deal with, and it’s one of those things I hope the senators can hear us and get to the table to reopen," she said.
She fears Hudson is losing valuable time with each passing day.
Courtesy: Micaela Hill
"Knowing that because of our congress not wanting to kind of come to the table, delaying his plan of care and potentially giving him that lifesaving bone marrow transplant, it breaks my heart and makes me angry, but I want to hold him tighter and want to get him through it," she said.
Micaela has created a Facebook group called Hudson's Village.
Her hope is to spread awareness of Dock8 and to bring additional support for her son.
The Source: Information was gathered through Micaela HIll.