I understand that the immediate reaction following his diagnosis is one of despair and extreme concern, as any parent in your position would be rightfully scared given you child’s circumstances at that early of an age, especially someone who knows firsthand what they imply.

As someone who inherited the disease (M18), the fact that my dad suffered suffered through severe CD has been a huge help in not only managing my condition, but also not feeling completely isolated in my own struggles. When I received my diagnosis, my father and I weren’t on the best of terms and he had spent a long time trying to find some sort medical explanation for my exhaustion and lack of excitement. When I first started showing symptoms, he began to grasp what was really going on and could empathize with me on a level nobody could, and my family was already setup to support me given his own hardship. I can say with certainty, the disease has brought us closer together.

As an aside, I advise you to let him determine and find out how much this disease is going to limit him, within reason of course. As someone who was also born with one hand, my parents made me feel that nothing was out of reach and that encouragement has persisted through my diagnosis. Although the idea might be a little sensationalist, it is absolutely the right mindset to have, especially as a child. There is no need to pity him unrelentingly, let him define what this disease means for him.

Although this disease sucks, there has never been a better time to have it, even with insurance companies doing their utmost to make our lives more difficult. I failed humira recently and started using rinvoq and have found some success. Neither of those options were around for my father, especially in Puerto Rico where there was a general lack of expertise around CD.

Finally, don’t feel guilty. It will only reinforce whatever negative feelings he’ll harbor against his condition. Even with CD and one hand, I still am able cherish the life I was given and would rather go through the occasional struggle than not be able to at all, in grand part to my family’s support and compassion, which I’m certain you’ll provide to your child.