Update:

In early June, after genetic testing was done for Smitty’s family members, his little brother Jameson was diagnosed with XLP-1 as a result of the same SH2D1A gene. Jamie also requires a stem cell (bone marrow) transplant. Smitty will begin his transplant on August 27th at Boston Children’s Hospital. Jamie will begin his transplant in the in October. Please donate and pray for his parents as they go through all the months of care required. These transplants use chemotherapy in the beginning of treatment, followed by months of isolated intense medical intervention and monitoring.

After seeing a team of specialists at Boston Children’s Hospital, Smitty has been diagnosed with XLP type 1 disease. Only one in 1 million children suffer from this ultra rare disorder. Smitty has a gene mutation that is causing this disorder and he requires hospitalization and treatment. The condition is characterized by a severe overreaction of the immune system to the Epstein-Barr virus, leading to a high mortality rate —typically in childhood. Without treatment, most individuals with XLP die in childhood from HLH or other complications. The average lifespan for individuals with XLP is around 11 years. Smitty will turn 10 in November. Smitty will be heading back to Boston Children’s Hospital on April 22 for additional treatments and diagnostics to rule out complications, such as cancer (lymphoma). He will be having lung biopsy and a bronchoscopy as well. Smitty requires IVIG treatments infused every other week and IV antibiotics for two weeks to fight lung infections. The team of specialist is having Smitty impatient at Boston Children’s Hospital for about a month if not longer depending on what he now needs.

Hi I’m Patricia Brennan Teacher Assistant @ Albany High School. This is where I met Nancy Kelso Whitbeck. The mom of a very sick little boy named Smith. I have spent many hours listening to my friend talk about his strange medical issues and I understand her pain as a mom myself, her cries for help not knowing what’s wrong, and her husband and her managing time off for all of the treatments and care that Smitty has needed since he was initially diagnosed. The financial hardship has also taken its toll so I’m reaching out for help at this time when it is most needed.

Smith Martin O’Hearn known as Smitty was born November 11, 2015. Smitty had normal toddlerhood and childhood until he was 6 and began getting sick all the time.

He picked up Epstein Barr Virus. He had to be hospitalized due to high fevers and an inability to keep food down. After a few weeks, it became apparent that traditional response and treatment wasn’t working. His organs began failing and the doctors narrowed it down to either leukemia or a rare blood disorder called Hemophagocytic lymphohistiocytosis, known as HLH. Unfortunately, for Smitty, the diagnosis was HLH.

He received chemotherapy for six treatments, and thankfully the HLH began to subside, as well as the underlying Epstein-Barr virus. Unfortunately, it wasn’t another six months before he started to suffer from infections in his eye, his skin, his ear, as well as pneumonia. It was determined that his immune system had taken a big hit during the chemotherapy. Smitty has had IVIG therapy each month since, in order to have some of the vital support that the immune system provides.

In June 2024, Smitty had chest scans that showed he continued to suffer from pneumonia. He was treated for pneumonia in the hospital as an impatient several times since then, his symptoms not subsiding all the way. His pediatric pulmonologist suggested that the lung collapse he is experiencing is directly connected to his previous HLH condition. His parents were advised by physicians at the hematology oncology Melody center at Albany med to seek treatment at Boston Children’s Hospital.

In order to see the HLH world renowned specialist at Boston Children’s Hospital, his parents had to select different insurance policy that would allow them to attempt to have some of the costs covered out of state. Unfortunately, this coverage is not guaranteed and the family has to pre-pay for all appointments and services. His first appointment will be with five separate specialists at Boston Children’s Hospital, on March 16th, totaling over $2500, which must be paid in full before he can be seen.

Although his family is hopeful that some of that could be claimed, there is no guarantee that any of his care will be reimbursed.

The outcome for a patient like Smitty, who has HLH as well as as a pulmonary component and a reduced immune system is not good, and has forced his family to seek help.

His family requires support to make this happen for Smitty. Any donation will go to Smitty’s care in a special fund that will be managed to make sure that he continues to receive care at Boston Children’s Hospital and the Dana Farber Cancer center.

Thank you for taking the time to read this. All of your thoughts and prayers are appreciated in the by Smitty and his family.

Thank you,

Patricia Brennan