Sarasota toddler needs bone marrow transplant to combat rare disorder

A Sarasota toddler born with a rare immune disorder can only receive a life-saving bone marrow transplant at the National Institutes of Health.

A two-year-old boy has a rare genetic condition called Dock8 Immunodeficiency Syndrome, which affects only 250 people worldwide.A bone marrow transplant is a potential cure, but the procedure is only available through a clinical trial at the National Institute of Health.The boy’s mother is raising awareness and encouraging people to register as bone marrow donors.Without a successful transplant, the life expectancy for individuals with this condition is significantly reduced.

Two-year-old Hudson Hill is one of only 250 people with Doc8 Immunodeficiency Syndrome – a condition so rare that the National Institute of Health in Bethesda, Maryland is the only place where he can receive a bone marrow transplant that may reboot his immune system and cure his condition.

In many ways, Hudson is a typical two-year-old. He loves his mom, Micaela Hill, is a big fan of dinosaurs, Halloween and monster trucks.

On many days Hudson is a boundless bundle of energy but because both his mom and his dad carried the required mutated recessive genes that results in Hudson having fewer than normal immune cells needed to fight off infections.

Dock8, named for that gene, was only discovered in 2009 and impacts less than one in a million people.

Bone marrow donors are needed

Michaela Hill, 30, a registered nurse in the Stroke Coordinator at HCA Florida Sarasota Doctors Hospital chose to share her son’s story in part to raise awareness of Dock8 deficiency, as well as the need for people to register as a bone marrow donor – with the National Marrow Donor Program, formerly known as “Be the Match,” at https://www.nmdp.org.

As a relative, Hill is only a partial match for Hudson, who was diagnosed with Dock8 deficiency on Aug. 5.

Ideally bone marrow transplants involved 100% match transplants from the registry.

Since Hudson was diagnosed, mother and son travel to Johns Hopkins Children’s Hospital in St Peterburg, where he receives intravenous Immunoglobulin therapy – known as IVIG – each month.

“That takes antibodies from over 1,000 people, they spin it, they clean it and they give it to people with compromised immune systems so they can boost theirs,” Hill said.

The hope is those antibodies will help Hudson fight off anything he might catch.

But the IVIG is not without its own risks. Hudson started therapy Aug. 27 and contracted aseptic meningitis.

His second trip to Johns Hopkins for therapy, on Sept. 26, went better, as documented by Hill on “Hudson’s Village, “ a Facebook page she established to share their progress.

Hill noted that her “sweet Huddy Buddy,” took more than 12 days to bounce back from that treatment and should be able to participate in as many Halloween activities as he can, before his next treatment on Oct. 24.

Hudson’s IVIG days are 10 hours long and Hill must try and keep Hudson as still as possible.

Even with insurance, each IVIG treatment costs almost $600. To help defer the cost of those treatments and – hopefully treatment at NIH – Hill established a GoFundMe account, which can be found at https://bit.ly/4nK0MQm.

Why must Hudson be treated at the NIH?

Because little is known about Dock8 deficiency, the bone marrow treatment Hudson would receive is a clinical trial.

If Hudson is approved for the trial, he would at first be in Bethesday, Maryland for a week.

If a match is found, he would be there for 100 days.

“I pray he does get a match because that would elongate his life,” Hill said.

Without a match, Hudson may not live beyond his early teens, Hill said.

“With the current science the way it is, some people have made it to their 30s – most bone marrow transplants,” she added.

Roots in Sarasota and Sarasota Military Academy

Micaela Hill moved to Sarasota from Cape Cod in 2005 after her mother died and was raised by her grandparents. Barbara and Jack Hill – both of whom later died in 2019.

She attended Sarasota Military Academy, where she became a captain, and graduated in 2013.

Next, she received her BS in nursing at State College of Florida and worked as a registered nurse with Sarasota Memorial Hospital and later earned an MS in nursing administration from Western Governors University before becoming a travel nurse for two years and later moving to Las Vegas.

Hill lived in Las Vegas – where Hudson was born – for two years but returned to Sarasota in October, 2024, in part to be near her mom’s sister, Nancy Fus and her husband Tony, and for better access to healthcare for Hudson.

Hudson was frequently ill and did not even walk until he was 15 months, because of ear infections that she now knows were linked to Dock8.

“Coming here was a Godsend because we actually got hooked up with the immunology group here and they were able to diagnose him,” Hill said.

Since returning to Sarasota, Hill and Hudson – whose full name is Hudson Jaymes Hill, to honor Hill’s late mom Jayne and her uncle James – are settling in as much as possible, on his good days.

“He has a large vocabulary for his age, he impresses me every day,” Hill said. “The other day he was like, ‘rocketship, sky,’ I was like how did you do that?”

Hudson also attends daycare at The Treehouse, 5647 Beneva Road, when he is healthy enough to do so, though just in case, the staff has all be trained to use Hudson’s epipen if he has an allergic reaction.

“It really helps having him around other kids and his speech development,” Hill said.

Earle Kimel primarily covers south Sarasota County as well as land development and environmental issues for the Herald-Tribune. Follow him on Facebook, and X. He can be reached by email at earle.kimel@heraldtribune.com. Support local journalism by subscribing.