Leif’s Life-Saving Care at Cook Children’s: Hope for a Rare Immunodeficiency Disease

Leif was 3 months old when he started showing strange symptoms and getting sick regularly. His mom, Airica Dean, thought it was recurring pneumonia and brought him to multiple doctors near their home in Oklahoma. 

The medications he was being prescribed weren’t working. Then one day everything changed. 

“Leif coded in my hands and I have no words,” Airica said.
 
After the life-altering event, Airica and her husband were told not to expect Leif to live much longer and they started preparing themselves and their two other children. She also went to her chapel to pray and broke down every time. 

“I prayed to God to give me answers,” Airica said. “Leif was on life support and we were told not to expect him to live much longer. As I was leaving the chapel one day, I got a call from genetic testing. They had figured it out.”
 
Airica shares Leif’s story of his diagnosis with an extremely rare condition that eventually brought him and his family to Cook Children’s Immunology for treatment and support.

A 2-in-1-Million Diagnosis 

Among three medical conditions, Leif was diagnosed with X-linked hyper IgM syndrome, a very rare primary immunodeficiency disease which only affects about two in every 1 million male babies. It’s caused by gene mutations on the X chromosome. Individuals with this condition are more susceptible to recurrent and severe infections, including infections that are caused by organisms that do not normally affect healthy individuals. 

“I’m glad we finally figured it out, but then they told us Leif only had two years to live,” Airica said. 

After the diagnosis, Airica and her husband found another doctor, but they had no answers. They didn’t want to feel hopeless and continued searching to find a doctor who could save Leif’s life. 

Life-Saving Care with Cook Children’s Immunology

In her desperate online search for a cure, Airica came across Natalia Chaimowitz, M.D., Ph.D. who leads Cook Children’s Immunology Clinic and reached out to her. Dr. Chaimowitz told Airica she had a treatment for Leif’s X-linked hyper IgM syndrome. 

“As an immunologist, I’ve had the privilege of caring for children with rare disorders like hyper IgM syndrome,” Dr. Chaimowitz said. “These conditions may be uncommon, but their impact is profound. Early diagnosis can truly change the trajectory of a child’s life — giving them access to the care and treatment they need before complications arise.” 

After other doctors said he wouldn’t live past two years, Dr. Chaimowitz gave Airica’s family hope.
 
“Leif has an ultra-rare diagnosis that many physicians have never heard of, or only read about,” Dr. Chaimowitz said. “As a specialized immunology care center, we take care of children with ultra-rare diagnosis and are always up-to-date on diagnostic evaluations and therapeutics.” 

Leif received life-saving care as quickly as possible and had a bone marrow transplant in September 2024. He went into remission soon after and continues to be in remission today.
 
“It was a wonderful experience with Cook Children’s,” Airica said. “In Oklahoma, it was chaotic and no one knew anything, but at Cook Children’s it was amazing — Leif was in the right place, exactly where he needed to be. I can’t ever give Cook Children’s enough gratitude.”
 
In Cook Children’s care, Airica always felt reassured and comforted. She could ask questions and never be afraid of not getting an answer or potential steps to take. Even though he had a few challenges including his liver numbers and had to have a lot of teeth removed from chemotherapy, Airica is so grateful Leif is with her today. He just turned 3 years old in August.
 
“I cry every time I talk to Dr. Chaimowitz because I’m so grateful for her saving my son’s life. For all her work dedicating her time and her life to this field. There are no words to describe how grateful I am,” Airica said.

Overcoming Challenges 

Since Airica’s family lives in Oklahoma, one of their biggest challenges was being apart during Leif’s care, especially in the beginning. Eventually they were able to stay at the Ronald McDonald House in Fort Worth and it made Leif’s regular hospital appointments and treatment a lot easier. 

“We had a home away from home at the Ronald McDonald House and the staff and community helped make the challenging time joyful,” Airica said. “My family got to do fun activities and not feel so depressed all the time.” 

Airica and her family lived at the Ronald McDonald House for six months while receiving care at Cook Children’s. 

Hope for Families 

As with many health challenges, finding relevant educational resources, support and the best health care options possible, makes all the difference in both quality of care and quality of life. It can also be a time when someone may need to open up and lean on friends or family, even if it isn’t easy. 

“I had no idea what to do and was skeptical and scared,” Airica said. “Become comfortable with not being okay, reach out and look for resources that will help you.” 
Airica can’t stress enough how important it is to request genetic testing if your child is in a life or death situation with no answers. Prayers and leaning on her faith also helped Airica stay hopeful through very difficult times. 

“At the end of it all, you get to see your child smile,” Airica said. “It’s a hard journey, but it has been rewarding.”