Nutrition key for brothers with XLA

This blog post is part of IDF’s Stories Project, designed to provide a venue for those living with PI to share their experiences. Some are first-person accounts, others are written by IDF staff. If you have a story you’d like to share, email us at stories@primaryimmune.org.

Each day, Zayd, Sahm, and Jul Henry start their day with an apple and ginger shot, followed by fresh green juice made of vegetables and fruits, and breakfast may be homemade pancakes.

Ages 6, 9, and 13 respectively, the brothers share a diagnosis of X-linked agammaglobulinemia. Their mother, Tamar Henry, said a healthy diet is critical in supporting her sons’ immune systems.

“Health and nutrition play a huge part in the boys’ lives,” said Tamar.

Though doctors diagnosed the boys two years ago, they’ve displayed symptoms throughout their lives.

Jul contracted meningitis at nine months old and battled constant viruses and infections on and off for many years. Doctors thought that he had leukemia at age 4 but it turned out to be idiopathic thrombocytopenic purpura, a condition in which blood doesn’t clot normally causing bruising and bleeding. Several months later, Jul also developed an abscess on his throat which threatened to cut off his airway.

Still, in between all of his illnesses, Jul remained an active, healthy boy, said Tamar.

“He was always treated well and the doctors were fabulous,” she said. “He was only diagnosed with low IgA at that point.”

A few years later, younger brother Sahm spent a month in the hospital with septic arthritis at age 4.

“This was a particularly difficult time for us all. Zayd was under a year old by this time. Sahm recovered, but I felt his system had been weakened and he suffered infections every few months for two years,” said Tamar.

After experiencing a period of wellness, two years ago Sahm developed cellulitis, a deep skin infection caused by bacteria. The Henry family consulted with a new immunologist and subsequently a geneticist.

Blood tests revealed low IgA, IgE, and IgG in both boys, and they began intravenous immunoglobulin with a suspected diagnosis of XLA. Jul also began IVIG and eventually doctors diagnosed all three with XLA.

Tamar has since learned that she does have relatives with XLA.

“I was shocked by the boys’ diagnosis. I felt that it was indeed a very long time coming, and in so many ways a welcome relief and so good to start on a plan,” she said.

During the period when Jul struggled with his health, Tamar earned a bachelor’s degree in nutrition science and health. She applied what she learned to keep her sons healthy. In addition to avoiding milk and meats and concentrating on a mostly plant-based diet for her family, she also treats ailments with homeopathic medicine.

“We changed pretty much everything, from what our family ate to non-toxic household and beauty products. It made a huge difference to Jul's health, and I very much believe the subsequent health of his brothers. The boys have grown up being health aware and so are fully on board with the healthy lifestyle that we live,” said Tamar.

The boys receive monthly IVIG, but do not take prophylactics. During their treatments, which can take a good part of the day, the boys watch TV and play games together.

“It’s a small hospital and the staff has gotten to know them. It feels comfortable and it’s easy. We try to make the most of it,” said Tamar. “It is sad to think that we have only boys and that they are all sufferers, but the boys are so lucky to have one another and go through this together.”

While Tamar is originally from England, the Henry family currently resides in Saudi Arabia, with plans to move back to England in the near future. The boys enjoy traveling and attending school as well as swimming, playing video games, and joining in sports like soccer.

“The diagnosis only restricts the boys in the way they are learning to take care of themselves. They need to be aware of feeling unwell, of any unusual signs and symptoms, to tend to cut or grazes or alert someone who can help them when they fall,” said Tamar.

“It is important they sleep well, stay active, stay hydrated, and, as mentioned, eat well to stay as healthy as they possibly can.”

The pandemic has not negatively impacted the family.

“I feel like COVID has simply allowed us more quality time together. I have always been concerned about the boys’ health and, to be honest, have felt no different during this time. I have continued with the routines that encourage their health which are always vital, like taking vitamins, eating an array of nutrient-dense foods, drinking plenty of water, getting plenty of fresh air and sunshine, and of course, receiving their monthly Ig,” said Tamar.

Tamar said she’d like more people to consider diet in keeping immune systems healthy.

“Focus on your health, focus on your diet because that will help you get better overall,” she said.

Tamar said that at this point, the most challenging part of the XLA is knowing that her sons will always have to keep their diagnosis in mind as they navigate life. And she is striving to give them a solid foundation, complete with the knowledge that a healthy lifestyle will mitigate infections.

“I want them to feel empowered rather than consider this a condition that is weighing on them,” said Tamar.

Visit Tamar Henry’s Instagram page here.