My son Huxley turns 14 today, and has high hopes. He would like to someday go to a birthday party and eat the cake that is being served. Or maybe a brownie or a cookie. He’d like to try sushi, or Chinese food, or seafood. He’d love to go to a friend’s without worry, or to a restaurant without us triple-checking ingredients and cross-contamination with the staff. Huxley would love not to take his inhaler, Epi-pen, and other meds everywhere he goes where an allergen could be present, which is everywhere. He would like to never sit at an allergy table again at school lunch, at times alone. He’d like to enjoy high school without fear of an ill-fated prank, bully, or even just one honest mistake. He’d like to go to a college he deserves to go to without us in constant worry. Hux does not want to become one of the rare, but incredibly tragic statistics when a young adult can not recover from their allergen exposure.
Many of us have allergies and asthma, including myself, and Levi. For Hux, it is a different story. He is anaphylactic to multiple foods. He has severe food allergies, asthma that is often triggered by allergies, and multiple environmental allergies. Huxley thrives despite so many limitations. But he doesn’t want this to be the rest of his life, and we don’t blame him.
Huxley is anaphylactic to eggs, shellfish, peanuts, and tree nuts. He is also allergic to sesame, chicken, avocado, bananas, melon, and more. His environmental allergies are also through the roof. His severe asthma makes the danger of these allergens greater; they can cause an immune system response that can lead to life-threatening anaphylaxis and asthma attacks. Like many parents with children in this situation, the close calls and emergency room visits can be terrifying.
After months of research, and being on every allergy/asthma related social media group there is, we added Huxley to a waiting list of over 1800 people to be treated at the innovative and incredibly promising SoCal Food Allergy Institute, affiliated with Miller’s Children’s Hospital. (Feel free to check out socalfoodallergy.org for FAQs, more info). They are revolutionizing food allergy treatment, and over 3000 children are now living with food freedom! People are traveling around the world to be a part of the Tolerance Induction Program, which is different than OIT and incredibly specialized for the individual patient. Levi and I had no idea how we would fund the expensive annual program fee, the office visits, lab bills, and travel to California for a dozen visits. But Hux said, you can make it my birthday and Christmas presents for a couple years? And his brother, by his side always, offered the same. We knew we had to do whatever it took.
In May, Huxley had his first appointment and diagnostic testing. Levi took him, and Huxley was so excited to be a part of the program. His next set of appointments is four days in a row in late September; I will be taking him, and he’ll already be doing minor food challenges. It has been a lot of work and vigilance here at home as we begin treatment, which includes SLIT (Sublingual Immunotherapy) for his environmental as well. SLIT, as well as many other things, is not covered by insurance.
If you would like to help Huxley achieve his dreams, any monetary donation, even $5 would be so welcome. And if not, even warm wishes or a prayer of support as Huxley’s continues on this journey. Before my mom passed earlier this year, I had told her all about the program. She said, maybe some day you can make my meatballs for Huxley, and he’ll be able to eat them. Mom, I’m going to make that happen.