Five-year-old Jake loves the Avengers. He tells everyone that he is like the Hulk because he receives “special blood to make him strong.” And Jake does receive special treatment to make him strong like a super hero. He was diagnosed with Specific Antibody Deficiency in December 2012, and he now receives immunoglobulin (Ig) therapy to keep him strong.
From the age of 18 months old, Jake had 30 infections all requiring steroids and antibiotics, five bouts of pneumonia, adenoidectomy and sinus surgery before finally being diagnosed. It took a long time to diagnose him because his IgG levels were low 620's but not low enough to be immune deficient. He also kept losing the antibodies to vaccines, which is how he was eventually diagnosed.
“It's been a long, frustrating road, but my son is so tough,” says Jake’s mom Megan, “He is extremely bright and our brilliant immunologist's best and youngest patient.”
They advise other parents of children with chronic illnesses to keep a record of their children’s infections. Megan suggests, “Request your records and separate all of the specialists in a binder. I made a cheat sheet of each time Jake was sick and what antibiotics/steroids were used, so that I could answer questions in office, while also tending to my son. I would hand the print out to the doctors, and they loved having all of the information in a document that was in front of them instead of flipping through records. I used a word document and organized by date. I highlighted the surgeries to stand out.”
Whether parents use a binder system like Megan or organize records online through the IDF eHealthRecord, which is specifically designed for patients living with primary immunodeficiency diseases, keeping track your child’s health information is vital.
Megan’s mother was diagnosed with Common Variable Immune Deficiency when she was in her late 40’s. She has been receiving Ig for nine years. “She has been so amazing and given us guidance on what to expect. I believe Jake gets his strength from her,” explains Megan.
Jake gets his strength and inspiration from many, like his mom, dad, little sister, grandmother and, of course, his favorite Avenger, Captain America, who always helps others and is a nice guy.
Megan says, “Jake is already our little superhero and his little sister Cameron's Captain America. He has never complained about the hours infusing or the monthly blood work. I think he thinks that every kid does this. I laugh because his sister cries during his routine lab work, and he is comforting her. He is truly an old soul.”
Megan and Jeff admit that it’s been a challenging few years, but they are happy that there is finally light at the end of the tunnel for their little super hero.
Thank you, Megan and Jeff, for sharing Jake’s story! Would you like to share your story on IDF’s blog? Click here to submit your story.