The following post is by Kimberley Pfaff:
In most cases, a sibling bond is created right as the youngest is born. They can quickly become best friends, and in the end will share more support with one another than with their own parents. For Ricky, my son born with HI, his brother Mickey wasn’t only his wish come true, but a solid shoulder to lean on whenever he needed it. As soon as Mickey could understand Ricky’s frequent trips to the hospital were normal for our family, he constantly wanted to attend and reassure his big brother that everything would be okay. With every challenge Ricky faces, Mickey is there, cheering him on, protecting him. Mickey understands that we don’t consider Ricky “sick.” That’s not HI for us. We tell him, in all of his three-year-old wisdom, that Ricky has problems we are trying to solve, and the best thing we can all do is be there for him. It was never a surprise that Mickey took this on like it’s his job. He’s been Ricky’s rock ever since.
But it hasn’t all been easy for Mickey either. With Ricky’s unknown genetics, a plan had to be set for Mickey to pass a safety fast when he was born. But there are so many unknowns with Ricky’s hyperinsulinism. When Mickey was tested for the fast and hit just one low 60 mg/dL on the glucometer, we couldn’t determine if he had it too, or if it was because he was born a month early. In the end, he was released from the hospital only because his discharge papers included “released under care of mother” so they knew someone was caring for him, just in case he did face any challenges with his own blood sugar. Thankfully he didn’t, and Mickey grew a little differently than Ricky did. He became a caretaker, rather than a patient.
Those unknowns in our world, however, left us a little shaken up after Mickey’s birth. What about Ricky? What if he wants children? Who carries this gene anyway? All of these questions remain unknown, because there is nothing to look for, because there is still so much research to be done. Part of that research includes the growth of HIGR, the HI Global Registry, a platform used to collect data from HI patients around the world. This data collected from both patients and guardians offers professionals and doctors a window into many different worlds regarding hyperinsulinism, as it presents itself in so many different forms. The use of this registry is crucial to finding answers to questions that children like Ricky have had since birth.
Until then, Ricky and Mickey will simply have to accept their bond, because no matter how many times they may have their battles, in the end they will always choose each other. Happy World Siblings Day, my boys.
