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Benjamin was born on August 31, 1999. He was two weeks early, but still full-term. Aside from some breathing trouble requiring observation in the NICU, he appeared to be very healthy, and we were mostly focused on mom, who developed a very serious kidney infection after the birth requiring a 2 week return stay to the hospital.
Within a short couple of months, however, things changed. Benjamin was constantly ill with ear infections, sinus infections and pneumonias. His infections were also very difficult to treat, and sometimes required hospitalization for IV antibiotics. He never had “just a cold”, it always became something worse . . . Occasionally, he would get infections in his joints, so that it was too painful to walk, he could only cry . . .
Although he was able to meet developmental milestones, he wasn’t gaining weight. He was getting taller, but sort of stretched out. He had chronic diarrhea and malabsorption despite many diet changes. He had dark circles under his eyes and looked exhausted. In his first two years, Benjamin had been hospitalized several times. We were getting to know the ER doctors well . . . We knew in our hearts something was wrong, but all of the tests were negative. We were so afraid, and so heartbroken to see our beautiful little boy suffering all of the time.
Finally, during a trip to Florida over Thanksgiving, Benjamin became seriously ill. He had bi-lateral ear infections, sinusitis and pneumonia all at once. And upon returning home, he had a relapse and ended up back in the hospital for several more days. The pulmonologist suggested a referral to an immunologist at Children’s Hospital.
The immunologist discovered that Benjamin had Hypogammaglobulinemia (there's a mouthful) an antibody deficiency, and that his body does not fully respond to vaccines. He was placed on prophylactic antibiotics and was watched closely for break-through infections. Very soon it was determined that the antibiotics were not enough to protect him, and we started IV Gammaglobulin (IVIG) replacement therapy shortly after Ben turned 2. For him, this involved a 5 hour IV infusion at Children’s Hospital every three weeks.
In early 2007, after tolerating his therapy well for 6 years, Ben had a very serious reaction to his IVIG called aseptic meningitis. He had a grand mal seizure, temporary paralysis, severe head and belly pain, and vision problems. He missed two weeks of school and has been left with daily migraines that need to be controlled with additional medications to this day. He is also being watched closely for a seizure disorder.
We tried a few other brands of IVIG hoping to be able to correct the problem, but he then had anaphalaxis with two additonal infusions. By now, his infusions were being run so slowly to limit side effects that it was taking 10 hours to infuse him. Because of his new sensitivity to IVIG, we switched to sub-cutaneous IG infusions which he now receives at home over 4 hours through 4 injection sites every week. He continues to live with asthma, periodic joint pain (an autoimmune component of his disease), as well as sporadic autoimmune neutropenia. Because of his autoimmune complications, his diagnosis is now CVID (Common Variable Immune Deficiency).
Benjamin is now 9 years old and doing very well. Since beginning his gammaglobulin replacement in 2001, he has only had one hospitalization for illness when he was forced to trial off his treatments to see if his system would "kick in" (it didn't). The improvement in his quality of life has been dramatic! Because of this life-saving therapy, Ben can attend public school, participate in sports, and sing at the top of his lungs without coughing! He is an avid reader (especially of fantasy like Harry Potter and Lord of the Rings), and is fascinated by science and history.
If you've met Benjamin, you know that he’s very thoughtful for his age... he's been through a lot, but he doesn’t let anything get him down. He has an amazing spirit and a natural ability to look for the bright side. He feels deeply for his brothers when they are suffering in their disease, and stoically holds their hands through difficult procedures and reassures them that everything will be OK. He gives them the gift of HOPE that there may some day be a cure.