Dear Friends & Family,
Most of you know our story and the experience our son, Zander has gone through with his struggles with food allergies, Asthma and Eosinophilic esophagitis (EOE). We come to you today with excitement and hope for a new future for Zander that could change his life!
When Zander was 2 months old, we knew something was not right. He was covered from head to toe in a rash which later we found out as it progressively got worse was eczema. He would scratch himself until he would bleed and did not sleep at night. After endless doctors’ visits and tests, we found out he had 14 food allergies, most of which are anaphylactic (life-threatening). As new parents, hearing this was difficult, scary and stressful. We tried to find our new “normal,” which entailed steroid treatments, “wet wraps” for his skin, elimination diet for Mom and Zander, and carrying an epi-pen. Just when we were in a routine and his eczema was under control, his throat began to bother him to the point that he was not eating and at the cusp of “failure to thrive.” We were introduced to a GI doctor at this point, and after two endoscopies, we found out he also has a disease called Eosinophilic esophagitis (EOE), which inflames his esophagus when eating certain foods. Little did we know, this was going to be a long journey for Zander, not only in his recovery of his severe eczema, but also retraining our entire family HOW TO EAT, WHAT TO EAT, and how to save his life if he should have an accidental food allergy reaction and/or Asthma flare-up. We were stressed and terrified as new parents.
Fast Forward to now. Zander is 10 years old. We seem to have a pretty good handle on how to manage his allergies. A few hospital visits and scares here and there, such as being on a hike and having a yogurt snack accidentally spilled on Zander’s arm and watching his arm become covered in hives while at the top of a mountain. Reminders are daily for a food allergy family. There is continuous label reading, modifying every meal made, bringing your own food to events, and for some of us, not being able to go to 99 % of restaurants. Reflecting on the last few years, we feel he is “surviving” not “thriving” when it comes to growing strong and healthy.
When I ask Zander to explain the life of a food allergy kid, he will tell you the parts that are hardest are the family gatherings, birthday parties, holidays that are all centered around food. He has learned to be resilient in these times, but there are moments when he is still just a kid who wants to experience the same things his friends and family experience.
There was a recent moment that stands out, which inspired us to look deeper into finding options or a new direction for Zander. He got into the car after school one day, and as soon as the door shut, he broke down into tears. He managed to say “I tried to stay strong mom, but it just made me so sad. Today the entire school got a special treat at lunch, and it looked so good and I really wish that I could know what it tastes like. Why did God give me food allergies?” (Our heart aches for him in these moments)
When we did some more research, nothing seemed fitting for Zander with all the allergies he has. It wasn’t until his 10th Birthday party we had at his favorite restaurant, Intentional Foods (one of the two safe sit-down restaurants he can go to). The owner of the restaurant shared with us that their daughter, who also has life-threatening food allergies, was in a treatment program that is putting her allergies into remission. We did not waste time and started to find out more about this program located in Southern California. It was true! Their program is world-renowned, and helping children put their allergies in remission!
We discussed the possibilities with Zander, and he was ecstatic imagining life without food allergies! He was on board and wanting us to find out when we could get started.
We had our first consultation over the phone with their launch team. We learned that people come from all over the world for this treatment. It is not fully covered by insurance and could cost us approx. $40,000-$50,000 to complete with travel costs. It can last anywhere from 2-4 years or longer. It will be an intense few years. However, in the end, Zander will be close to graduating high school and starting a life where accidental exposure to his allergens will not be a life-threatening issue. He will even be able to eat his allergens in large quantities should he decide he likes them. We will head to California every 8-10 weeks for our treatment and will be in a strict daily regimen. We are ready to take this on and put up a fight against these allergies that have restricted Zander and our family for so long, and have caused so much fear, anxiety, and worry. The thought of sending our son to college or even out on his first date without the fear of allergies is a world we couldn’t even imagine.
With our humbling hearts, we come to you today to share that we are going to need help to pull this off, but we do believe that with our incredible village and God on our side, anything is possible! If you are in a position and able to help us financially or spiritually (we need our prayer warriors out there too), we would be so grateful. Please keep us in your hearts and prayers as we start the process to get through this next chapter. Please follow us through our journey as we begin this fight for food allergy freedom for Zander!