Asher's Medical Journey to a Cure

$6,085 of $10,000 goal

Raised by 89 people in 3 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

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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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Part 2
We’ve found our answer: We quickly realize that the staff at SoCal Food Allergy work as a well oiled machine. We meet with a doctor to go over Asher’s previous medical history. For the first time we are asked what Asher CAN eat, not just what he has reacted to. Two nurses come in and do a skin prick test for 30 allergies. Picture, itchy acupuncture (see attached photo). Asher is not a fan and gives the nurses a stern talking to. Fifteen minutes later they are reading his hives/whelts and putting benadryl cream on his back. He has now forgiven them and is busy flirting.
We head downstairs to Translational Pulmonary & Immunology Research Center labs, aka TPIRC labs. SoCal food allergy has just opened their own labs. This allows them to do testing in house and prevents many of the lab mix-ups and miss reads that were occurring previously. We do a happy dance when we learn that Asher will only need to have his blood drawn once at TPIRC’s lab instead of multiple times back home with the threat of lost lab work, delays and missed orders. TPIRC phlebotomists do their best to make the experience a positive one. A firetruck blood draw chair, sensory lights on the wall, fun squeezie balls and a treasure chest. Asher isn’t fooled. He fights the bloodwork like a prized bull and breaks our hearts as it takes four of us to hold him. We are done quickly and when I ask Asher to thank the nice ladies for his prize from the treasure chest, he replies “Thank you for hurting me.”

Adventure: On the walk back to Ronald McDonald house we reflect on how amazing our little warrior is. He sucked down an apple juice, ate a huge lunch, took a three hour nap and woke up ready to have more adventures. We took an Uber to the beach were we watched ships, chased down seagulls the size of turkeys and bought our awesome Uber driver a push pop at an ice cream truck to say thanks.

Tuesday, 5 am: Grandma calls with the news that Abe has gotten a tummy bug back home. She has gotten Anderson to school, Abe is excited to have a relaxing movie day, while grandma cleans and launders everything in sight. Grandma is a rock star! The Hidalgo’s come to the rescue with enough bland and hydrating provisions for the whole house. Abue and Tito are also rock stars!

Tuesday, 11:15 am: We say our repeated thank yous to Ronald McDonald House and head for LAX with MORE than enough time to get through TSA. I get a little car sick in the Uber and feel glad to arrive at LAX quickly.

Tuesday, 11:45 am : We make it through TSA is 5 minutes flat. LAX is a rock star. Good thing too. As TSA sends our bags through the x-ray machine I begin to feel flushed and nauseous. Abe’s tummy bug has hit mommy as well! Good thing we have until 2:20. I rush to the restroom to toss my cookies while Super Dad and Asher rush around purchasing super expensive tummy bug provisions. Daddy IS a rock star! I hold some pepto and coke down and pray that I can make it on the flight.

Don’t vomit on Kane Brown’s Louis Vuitton: I spend the next two hours attempting to will the evil tummy bug out of me. I am alive enough to sit down in the preboard line. At 1:50 we are called to preboard. I stand on wobbly legs and attempt to help Super Dad with our bags and Asher. As I stand I come face to face with my country music idol and future boyfriend (sorry Super Dad). Kane Brown and his adorable wife are standing in line directly behind us! He is less than two feet away! I am sharing my germs with Kane Brown! If he gets the tummy bug this week, it’s from ME! I keep it cool and take a super creepy selfie with half my face and his side profile in the background as proof. I will not toss my cookies right now! It I toss my cookies on Kane Brown, he WILL remember me FOREVER! Instead, we exchange a hello and I give his VERY sweet wife a heads up that we will be in the very back of the plane if they want to stay away from the fussy baby. Asher has now fussing and thrashing as we wait in line. Kane Brown IS a rock star, but he’s got nothing on my Super Hubby who is now handling a small wildebeast and all of our baggage as we board.

Tuesday, 2 pm: We board and settle in for our much shorter flight. I find every barf bag in the surrounding area and attempt to breath deeply. Oh wait, the group of guys in front of us look VERY familiar. It’s For King and Country! We play it cool and strike up a conversation with some band members before take off. They are heading home to Nashville after a month long international tour. We apologize for our fussy toddler throughout the flight and are met with compassion, charm and patients. For King and Country are Rock Stars!

Tuesday, 9pm Nashville: We make it to Nashville in record time and I am feeling like a human again. We board our next flight and head for Charlotte. Our fussy boy finally falls asleep.

Tuesday, 11:00 pm Charlotte: We’re almost home. Now to stay awake for the drive. Again, daddy is THE true rock star. We reflect on our amazing journey. Even with all the crazy bumps along the way, we feel truly blessed and prayed for. The excitement keeps us awake as it really hits us that we have found the cure for our sweet boys food allergies and possibly his asthma as well.

Tuesday, 2:00 pm Home: We are finally home. Grandma has done a great job of holding down our ebola fort.

Waiting: We now wait for 7 to 10 weeks. Asher’s blood work, skin testing and food profile will be reviewed and a treatment plan will be created. Once the treatment plan is created we will be able to schedule his next appointment which will require a West Coast stay for anywhere from 3 to 10 days.

Our house has gone from spotless (thanks grandma) to an explosion of gatorade, crackers, luggage and travel size toiletries while I recover from the tummy bug. Asher is currently feeding a teddy bear cracker crumbs that are now all over the kitchen table and floor and a days worth of toys are on the floor. I’ve got two loads of laundry waiting to fold, dinner to cook and a dishwasher to unload. It’s a beautiful mess. I wouldn’t have it any other way. I am so blessed to be on this wild ride. We are so VERY thankful for all of those who continue to help us through it.
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WDBJ&'s Lindsay Cayne interviewed our family today. It is such a blessing to have Asher's story out there for other families who are on a similar journey!
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We are so excited! Your support has helped us raise almost $4000! The non-insurance covered cost of treatment for one year is $4500. We can't believe that in five short days your generosity has done so much! Please continue to share and re share Asher's story on social media, with loved ones and your community. It takes a village and we've got a great one!

Asher update: Ash made his first gingerbread house while we were snowed in this week. He was thrilled to have the chance to eat two lollipops and requested a ladder for his roof! We were thrilled to find all the safe supplies needed before the snow hit! FYI-lard icing doesn't taste that great but it sure can hold up a graham cracker house!
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$6,085 of $10,000 goal

Raised by 89 people in 3 months
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