Asher's Medical Journey to a Cure

Please check out Asher’s story by clicking on the photo above.

We would like to thank Andrew McMahon in the Wilderness for allowing us to use their beautiful song, “This Wild Ride.”

Some of the precious photos in the slideshow above were taken by Abby Joy Photography.

The Diagnosis


Asher was born healthy.  Our third, beautiful baby boy.  Asher is a bright child who has always been eager to explore the world with his brothers.  Our wild ride began soon after we started introducing solid foods when we sadly discovered that Asher’s world would have to be a little smaller and safeguarded than the one his brothers inhabit. Our pediatrician encouraged us to introduce peanut butter early (a fairly new American Academy of Pediatrics recommendation). We fed Asher a pea-size amount of peanut butter. He developed a rash immediately and began to vomit.  A trip to the allergist confirmed what we already suspected: Asher is allergic to peanut butter and needs to avoid even the smallest amount. Additional testing found that he also has an egg allergy. This required difficult changes, but we felt like we had the knowledge needed to check package labels and keep Asher safe in this new world of food allergies. No more PB and J, a childhood staple, for his older brothers!


Two weeks later, Asher was enjoying what we thought was an allergy-free meal. He was reaching for a piece of garlic buttered bread. We checked the label three times,  no egg, no peanut--we were safe. I, his mother, handed him a tiny piece of the bread. Within seconds he had hives on his face and hands, everywhere the greasy butter had touched his skin. We grabbed him from his high chair and ran to the bathtub. On the way he began to vomit and broke out with more hives. We gave him Benadryl, which seemed to help, but twenty minutes later his whole body flushed bright red and he began to cough and wheeze. We rushed to the ER and learned that we should have used his Epipen and called 911. We’re lucky our sweet boy recovered with the quick support of ER physicians. We returned home in shock. How could this have happened? Had I almost killed our baby with a tiny bit of seasoned bread?  How could such a basic necessity, food, be so dangerous for our child?


We made more trips to the allergist to test for a long list of possible allergens to determine what had almost killed our baby. The results showed a rare but strong allergy to garlic that baffled our allergist. So again, we thought we could handle this one.  Now we knew what to avoid, we would simply adjust life to avoid it. However, this proved to be not so easy! We soon learned that garlic is in many market foods and doesn’t need to be listed as a stand-alone ingredient. Any product that lists natural flavoring, spices, or broth is likely a risk to Asher’s life. Even uncooked meats had to be chosen carefully, as garlic is often used with other preservatives.


To add just one more brick to the already heavy load of fear we faced each day, after two ambulance rides to the ER and a hospital stay, Asher was also diagnosed with asthma. We learned that when asthma and food allergies are combined, the risk for fatal anaphylaxis increases by 50%. We prayed a lot.


The list of allergens continued to grow as we offered an alternative to peanut butter.  Asher reacted to sunflower in Sunbutter, which is considered safe for most children with a peanut allergy. Many tree nuts were also added to the list during another round of allergy testing.


Our Reality


Our life as a family of five has become very isolated. Church, family gatherings, school, and community events all pose potential danger and cause great anxiety. Any trip outside of the home with Asher requires a great deal of planning to ensure that he has enough safe food while we are out, that our destination will be safe, and that medications and safety supplies are packed along with the typical needs of three young boys. Due to airborne allergies, even a 10 minute trip to the grocery store could cause a reaction. A seemingly harmless open bin of nuts has us running for the door. Meals at restaurants are rare. Garlic is very fragrant and causes Asher to begin to clear his throat, develop red-rimmed eyes and a runny nose, just from the scent!  Simply bringing safe foods from home doesn’t make another environment safe.


Worries For the Future


With all of these obstacles, we lose sleep at night worrying about Asher’s future. How will Asher ever safely attend preschool or Kindergarten? We’ve created a safe little bubble for him at home. Asher has been blessed with an amazing grandmother who comes into our home daily to provide care while we are at work. She also helps make safe meals and snacks from scratch for Asher because quick and easy meals are no longer an option. This bubble cannot and should not last much longer. Asher is a social, curious, and inquisitive little boy who wants to discover the world around him through hands-on experiences.


The Search


As we’ve searched and learned everything we can about food allergies, we’ve discovered multiple treatment options. A trial at UNC for a peanut patch and Oral Immunotherapy (OIT) is available in Virginia Beach and North Carolina. Both of these options may help Asher with his common allergies but have many risks involved, including a high risk of anaphylaxis during treatment. They also require a year or more to treat each allergy and weekly or biweekly visits to specialists three to six hours away from our home in southwest Virginia. We continued to search for a treatment that could treat all of Asher’s allergies SAFELY.


A Good Option for Asher


We came across Miller Children’s Hospital and The Southern California Food Allergy Institute while searching for a place that could treat Asher’s garlic allergy. We cried when we discovered that The Tolerance Induction Program (TIP) at Southern California Food Allergy can actually provide a cure for our son.  Over the last 13 years they have treated over 3,000 children, each child having an average of 10 to 12 allergies. Full treatment plans typically last 14 to 16 months and require an in-office visit every 5 to 8 weeks. After treatment, the children are able to eat their food allergens freely and with no risk of anaphylaxis. Once they have completed treatment, they must continue to eat a maintenance dose of their allergens monthly. They must also continue annual or twice annual visits to SoCal Food Allergy to ensure they remain allergy free.

We also discovered that many children who are treated using TIP also have asthma and that many have seen their asthma symptoms decrease after completing the program. Through research we know that food allergies and asthma are often connected.


We Need Your Help


We’re fortunate to have Insurance that will cover the clinic appointments, but we also need to cover the costs for the actual treatment, cross-country travel, and lodging needed to stay on target with the individualized treatment schedule designed to cure Asher’s allergies and give him a chance for a normal life outside his current bubble. We can’t get there on our income alone. We need your help. Please consider contributing to help our sweet boy live a safe and normal life.  

Click on the link below to learn more about TIP and why we feel it's the best and safest option for Asher.

The Tolerance Induction Program

https://socalfoodallergy.org/

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Rachel May Waff 
Organizer
Radford, VA
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