Cure for Joaquin's 29+ life-threatening allergies
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Joaquin's first anaphylactic reaction was to a bite of hummus when he was just over a year old - his eyes began watering and then his lips and face swelled, he started drooling and became covered in hives, and then quickly became non-responsive while we waited for the ambulance to arrive. Since then we carry 2 epi-pens, his inhaler, benadryl, and claritin with us wherever we go. Our mantra has become "Epi first, Epi fast."
Joaquin's ever-growing list of food allergies includes seeds (sesame, mustard, poppy, flax, sunflower, pumpkin, fennel), tree nuts (almonds, hazelnuts, walnuts, brazil nuts, cashews, pistachios,etc.), peanuts, shellfish, egg, quinoa, buckwheat, millet, kidney beans, avocado, zucchini, dates, figs, pears, plums, peaches, dill, and cilantro. Joaquin also has asthma and environmental allergies to tree pollen, grass, weeds, dust mites, cats, and most dogs. The extent and severity of Joaquin's allergies keep him from participating in many events at school and in the community. He is not able to attend playdates, birthday parties, or sleepovers, and is not able to eat in most restaurants. Even a trip to the grocery store is stressful - most pre-packaged foods either contain something he is allergic to or have been processed on the same equipment as one of his allergens. Only the top 8 allergens need to be labeled on packages, making it necessary for us to call manufacturers to find out if any of his allergens have been included in their products hidden under "spices" or "natural flavors." Sometimes companies won't disclose their ingredients because the information is proprietary. Joaquin brings the same sandwich to school for lunch every day to eat at the table that is designated safe for him in the cafeteria. He has eaten many lunches at that table alone.
Food allergies are not Joaquin's only challenge. He has overcome other obstacles and recently graduated from speech therapy, occupational therapy, and physical therapy. Joaquin has been the subject of bullying due to his challenges, which has certainly taken an emotional toll on him. He has had eggs waved in his face and other kids have thrown unsafe foods into his lunchbox. We don't find many people who are willing or able to keep Joaquin safe - from friends to babysitters, and the lack of friendship and support has been difficult for the whole family. (We have a few gems - you know who you are!!)
***Enter Southern California Food Allergy Institute***
We live in Vermont, but we are hoping to fly to California 10 times per year for the next 3 years to attend SCFAI's Tolerance Induction Program. They have a 99% success rate treating children like Joaquin for his food allergies, but he will have to travel there every 5-6 weeks for several years. We were on a waitlist that was 1670 people long, but our turn has been called and Joaquin's first appointment is at the end of January. The cost to us is astronomical. We won't know the complete details of his treatment plan until our second visit, but based upon children with similar allergies, it will be about $55,000 per year. That includes the program fee of $4500/year, Lab Tests at $3500/year, skin and patch tests at $2800+, sublingual immunotherapy at $100/month, $450 for each doctor visit, plus $120 for spirometry at some visits. We also have 10 sets of flights from Vermont to California at about $1200 per visit, hotels at $200/night, rental car, missed work (we are self-employed owners of a community acupuncture clinic), and boarding for our poodle Jasper.
It won't be easy, but we have to do it for Joaquin. This will make an enormous impact on his life and will open up countless opportunities for him.
Joaquin's ever-growing list of food allergies includes seeds (sesame, mustard, poppy, flax, sunflower, pumpkin, fennel), tree nuts (almonds, hazelnuts, walnuts, brazil nuts, cashews, pistachios,etc.), peanuts, shellfish, egg, quinoa, buckwheat, millet, kidney beans, avocado, zucchini, dates, figs, pears, plums, peaches, dill, and cilantro. Joaquin also has asthma and environmental allergies to tree pollen, grass, weeds, dust mites, cats, and most dogs. The extent and severity of Joaquin's allergies keep him from participating in many events at school and in the community. He is not able to attend playdates, birthday parties, or sleepovers, and is not able to eat in most restaurants. Even a trip to the grocery store is stressful - most pre-packaged foods either contain something he is allergic to or have been processed on the same equipment as one of his allergens. Only the top 8 allergens need to be labeled on packages, making it necessary for us to call manufacturers to find out if any of his allergens have been included in their products hidden under "spices" or "natural flavors." Sometimes companies won't disclose their ingredients because the information is proprietary. Joaquin brings the same sandwich to school for lunch every day to eat at the table that is designated safe for him in the cafeteria. He has eaten many lunches at that table alone.
Food allergies are not Joaquin's only challenge. He has overcome other obstacles and recently graduated from speech therapy, occupational therapy, and physical therapy. Joaquin has been the subject of bullying due to his challenges, which has certainly taken an emotional toll on him. He has had eggs waved in his face and other kids have thrown unsafe foods into his lunchbox. We don't find many people who are willing or able to keep Joaquin safe - from friends to babysitters, and the lack of friendship and support has been difficult for the whole family. (We have a few gems - you know who you are!!)
***Enter Southern California Food Allergy Institute***
We live in Vermont, but we are hoping to fly to California 10 times per year for the next 3 years to attend SCFAI's Tolerance Induction Program. They have a 99% success rate treating children like Joaquin for his food allergies, but he will have to travel there every 5-6 weeks for several years. We were on a waitlist that was 1670 people long, but our turn has been called and Joaquin's first appointment is at the end of January. The cost to us is astronomical. We won't know the complete details of his treatment plan until our second visit, but based upon children with similar allergies, it will be about $55,000 per year. That includes the program fee of $4500/year, Lab Tests at $3500/year, skin and patch tests at $2800+, sublingual immunotherapy at $100/month, $450 for each doctor visit, plus $120 for spirometry at some visits. We also have 10 sets of flights from Vermont to California at about $1200 per visit, hotels at $200/night, rental car, missed work (we are self-employed owners of a community acupuncture clinic), and boarding for our poodle Jasper.
It won't be easy, but we have to do it for Joaquin. This will make an enormous impact on his life and will open up countless opportunities for him.
Fundraising team (2)
Julie Suarez Cormier
Organizer
South Burlington, VT
Jane Cormier
Team member
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