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Asher's Medical Journey to a Cure

$6,530 of $10,000 goal

Raised by 98 people in 6 months
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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The beginning of food freedom!
When we discovered Asher’s garlic allergy, we had no idea how many foods we would need to avoid. Tomato sauce was one of them. After months of searching and calling companies to inquire if their “natural flavoring” or “spices” contained garlic, we finally found a garlic free spaghetti sauce. For the last 18 months we have purchased this sauce and served it to our older boys. Even though we knew it was garlic free we continued to reframe from giving it to Asher. The sauce contains many herbs and spices that Asher has not had.

You see, for young children with food allergies, avoiding a list of food doesn’t equal safety. It is standard practice for Allergists to only test for things a child has reacted too. We call this the “wait and see” approaching and it is the scariest thing about being a food allergy parent! Avoiding known allergies isn’t easy but guidelines and safety precautions give you a since of control. The “wait and see” factor is like spinning a Roulette wheel every time your child eats something new.

So, tonight we celebrate and eat fearlessly! The Southern California Food Allergy Institute has given us the knowledge and power we have been so deprived of in caring for our sweet Asher. The extensive testing that was conducted during Asher’s first visit has given us a true list of ALL his allergies. We may have 23 foods to avoid but we are no longer spinning the wheel each time our son eats. Tonight we celebrate food freedom and all that is to come! Asher ate his first homemade “garlic free and egg free” pizza. He declared it a PIZZA PARTY!

Thank you for your continued prayers and support. This journey is just beginning and we know we have many months and challenges to overcome. Knowing that we have so many cheering us on and thinking about us every day makes all the difference.

Love,
The Waff Pack
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It’s getting real!
We have started to collect all of the foods and supplies Asher will need. I reread Asher’s treatment plan this week and realized that we will be starting more foods then we originally thought. Here’s a bit of info to help you understand the process....

Challenge = Eating a large amount of a food (under close doctor supervision) that you are at risk of reacting to).Labwork results show that it is unlikely that you are allergic.(typically nuts)

Maintenance= Once foods are challenged successfully you are free to eat them. And these foods move to maintenance. You are required to eat a minimum amount per day/week but can eat as much as you like.

Dose= Eating a very small amount of a food that you are allergic to. Close monitoring by a medical care team is provide. Your vitals are monitored closely. The patients heart rate is increased through vigorous activity for 5 minutes to insure that anaphylaxis is unlikely to occur when dosing at home.

At Home Dosing= Once you successfully dose an allergy food in office you then begin dosing small amounts at home that slowly increase. These foods are eventually challenged in office at a larger amount and they then move to maintenance. (Allergy food maintenance takes longer to achieve and many more steps are included before freely eating the food).

At our first treatment visit Asher will ....

Challenge: Macadamia, coconut flour, pine nut and pecan
Dose: Quail egg yolk (this is the first step in treating his hen egg allergy), pistachio, chestnut, sesame

Reality is sinking in with all of these foods in our home. Items we have avoided are now going to be in Asher’s daily diet.

Asher is loving his new kitchen tools. We had to upgrade our measuring tools by purchasing a TPIRC approved set. Apparently not all measuring sets are percise. We will be adding a gram scale next.

As always, thanks for your continued prayers and support!

Love,
The Waff Pack
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Asher’s journey is finally picking up speed! After waiting almost 10 weeks for lab results and his treatment plan we finally have answers! Tonight Asher started off treatment by downing three of his recommended foods at once! He drank a smoothie with 1 serving pear, 1 serving cherry and one serving almonds. These all included skins, which are the crucial part of the plan. The skins contain the recommended proteins that will help Asher overcome his true allergies.

Asher will need to eat the following 3 to 5 times per week EACH. It’s a lot for a toddler. We are SO thankful he is a good eater!
1 serving pear
1 serving apple
1 serving stone fruit (peach, cherry, plum, nectarine)
1/2 oz chicken
1/2 oz turkey
1/2 tsp almond
1/2 tsp wheat germ

We will be heading to his second appointment in June. During this appointment Asher will eat small amounts of macadamia, coconut, pine nut and pecan.Then we will begin eating these foods in prescribed amounts at home.

Asher’s plan includes 8 trips to Cali for treatment. During his treatment he will challenge and dose 23 foods!

Continued prayers are always needed! We are so thankful to have so many loving arms surrounding Asher in this process.
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So, WOW! We are back from our first trip to SoCal Food Allergy. We have SO much to share with everyone. First, we would like to thank everyone for your continued prayers and support. Without you all of this would not be possible! We also want to thank Miracle Flights for Kids and Long Beach Ronald McDonald house for their assistance.

Prior to trip: Mommy freaks out because Norovirus and flu have hit the NRV hard. Lots of prayers that Asher, Andrew and I stay healthy for our journey.

Sunday, 4 am : We set off for Charlotte with plenty of time to get to our 8:15 flight. Asher chatters about riding on an airplane until falling asleep halfway there.

Sunday, 6:45 am: We arrive with plenty of time to get to our flight.

Sunday, 6:50-8:08: TSA purgatory! We wait in a long line at TSA, but move to screening quickly. This is where the trouble begins.... They are not happy with the amount of liquids we have brought along for Asher. They don't understand why we need so many meds and foods. We wait 45 minutes for a supervisor to arrive and look over our items. At this point it is 8 am and we are starting to freak out a bit. I am given the choice to have all liquids tested or receive a full pat down (even though we have all been through full body scans and all of our items have been through the X-ray machine.) I quickly agree to a pat down at 8:08. We later learn about TSA precheck, which will prevent this from happening again.
Asher and I begin running to our terminal, which is a ten minute walk that we turn into a 4 minute run with lots of baggage and a stroller. We separate from Andrew because his bag was also pulled and is being searched. Picture the horror movie where you scream at the TV, "Don't separate!, Why would you separate!". Asher and I arrive at our gate at 8:12 and it's a ghost town. Picture candy wrapper tumble weeds and sketchy looking side glances from lone passerby's.
The screen above our gate says on time for 8:15 but no airplane is at the gate. I spot someone in a Southwest Airline shirt and ask for help. We glance back up at the screen, It's 8:14 and the sign flips from on-time to departed as we speak. I begin to melt down as Andrew runs up beside us. The very kind Southwest agents (Now we have two. "I think they were preparing to call for backup.") help us find another flight. They quickly rebook us for a flight that is boarding at the next gate as we speak. My meltdown ends, we thank the agents and resist kissing them. Backup is on standby, after all.

Sunday, 8:35: We are sitting safely on a plane bound for Baltimore, then Kansas City....... then finally LAX. Our journey will be 3 hours longer but we are on our way! We aren’t able to preboard on our first flight, but a nice passenger offers his seat so that we can sit together and we quickly wipe down all surfaces before buckling in. Asher is great about wearing his mask while we are boarding and traveling through airports

Flying high, Get me down from hear!: Asher is so excited to fly! (See video attachment) He enjoyed take-off but isn’t so happy once we hit the sky. We attempt to quiet his yelling of “I want back on the ground!” and “It’s gunna fall!” A lollipop does the trick and he settles down for our long journey. By our second flight from Baltimore to Kansas City he is a pro and begins yelling “Pop a wheelie!” every time we take off. We enjoyed seeing The Rockies and Grand Canyon from the sky.

Sunday, 4:30 pm (LA time, which is three hours behind our usual Eastern Standard.) Our total time for air travel is 11 hours. Asher was a rock star! We navigate LAX easily (Charlotte needs a few lessons from these guys!) We are now traveling experts and walk side by side, arm and arm with copious amounts of luggage, blocking all other world travelers from passing us as they go on their not so merry way. We grab an Uber, taking WAY too long to load, put in a car seat and buckle in for our 25 minute car ride to Ronald McDonald House.

Sanctuary! : We arrive at Long Beach Ronald McDonald House and are overwhelmed by the feeling of home. Kind staff, playground, playroom, a spacious room with all the comforts we needed after our travels, four fully stocked kitchens to prepare Asher’s meals, our own mini fridge and home cooked meal for Andrew and I (We have journeyed with all of Asher’s food, and given up some of my innocence along the way.)

New friends: We meet two other families with young boys who have traveled from afar to receive treatment at SoCal Food Allergy. We share our stories and quickly form friendships we have so longed for in our food allergy isolation. Asher is the youngest and the only one just beginning his treatment. Our home away from home is complete with Asher’s “LA brothers”.

Monday, 4:30 am: Wake up! Asher isn’t on Cali time yet.

Monday, 8:00 am: We squeeze in a quick high five with Batman (see photo attached)
as we head out the door and down the street for our 8:30 appointment.

Common Ground: We walk into a waiting room full of other families who are on similar journeys. We can see shared understanding, hope and relief in everyone's eyes. Some are just starting the program, like us. Some are eating many of their allergies freely already and have come with Tupperware containing foods that once caused near death, but now are slowly being consumed in small amounts until they are able to eat them as much as they like.
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