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Asher's Medical Journey to a Cure

$7,025 of $10,000 goal

Raised by 104 people in 8 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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Trip 3
Part2

We wake up at 2:45 for our 5:40 flight at LAX. We enjoy a pleasant 18 minute drive that would typically take over an hour during the morning rush. The airport is surprisingly busy at 4 am and we are grateful for TSA precheck as the TSA line is out the door! Asher smiles and waves as we walk by waiting onlookers. I’m pretty sure he thinks they are waiting for his autograph before he boards his private jet home. Rock Star M.O. continued.

We get to precheck and I am told by the agent that my ticket has my gender down as male and that I must return to the ticket counter (WAY over there) to have it changed. I swallow back the impulse to ask when the ticket counter became qualified to perform gender reassignment surgery and run back to the ticket counter. I quickly have the ticket fixed (the ticket counter staff do not hold back on the smart comments). I quickly reach precheck again and it’s smooth sailing from there. I thank my lucky stars to have precheck as we pass the long TSA line once more. If we had this happen in THAT line we would have missed our flight when I had to stand in it twice.

Asher is a model passenger on our flight home. He even gets a chance to fly the plane and speak over the loudspeaker with the flight crew to everyone on our flight. He is becoming quite the little traveler and Miracle Flight ambassador. A great friend with mad t-shirt making skills has made Asher a Miracle Flight shirt for each of our trips. This has given us the opportunity to share Miracle Flights mission with SO many. Miracle Flights is another amazing non-profit that is a great choice when donating. You can even donate or will your unused frequent flyer miles to a child in need of medical care that is out of reach due to distance. We hope to organize a fundraiser for this organization once Asher completes his treatment. Stay tuned for more info!

Our checked bag with ALL of my clothes doesn’t make it to Charlotte, otherwise everything goes smoothly and we make it home in time to give lots of love to Abe and Anderson before bed.

Grandma continues to reach true Rock Star status. I’m talking Pat Benatar, Stevie Nicks…. While we are gone she nurses a sick Anderson back to (almost) health. Anderson proclaims grandma the best caretaker (I agree) and is now in tip-top shape after two antibiotics and steroids.

As always, we are sending lots of jet lagged air hugs your way! We are so thankful to have such a supportive team of prayer warriors. It takes a village. You are OURS!

P.S. If you see me at work on Monday and are wondering why I am wearing a potato sack and my hair is a hot mess, it’s because all of my clothes AND hair brush AND hair straightener are currently on a FedEx truck traveling from Houston, Texas. Fingers crossed they toss in a pair of cute cowboy boots for my troubles.

Love,
The Waff Pack
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Trip 3
Part 1
The 7 weeks of treatment at home leading up to this trip were nothing short of amazing. We watched our strong willed toddler power through eating more nuts (and quail egg yolk) than we have eaten in our lifetime. To be fair, I have never roasted Chestnuts on and open fire. After watching my child consume 3 teaspoons of the bitter groundnut, I’m not sure who would want to, YUCK!

Asher IS a Rock Star and by “rock star” , I mean the moody, demanding, yet very successful type who also happen to be super cute and popular with the ladies.

Our flight to LAX went smoothly and Asher was a perfect example of our amazing parenting! He was charming, polite and slept like a sweet charab for three hours during our flight.
Then irassional toddlerhood took over. We rented a small SUV instead of a minivan and to Asher this was akin to being booked in economy class instead of his personal private jet. Andrew and I of course received a Rock Star style tongue lashing through LA traffic….

Asher as he is being buckled in: I don’t like this car! I Don’t Like This Car! I DON’T LIKE THIS CAR!
Asher as we head onto the 405: I want MY car! I DON’T LIKE THIS CAR!
Me: I take a few deep breaths and channel my inner Kate Middleton.
Me: Calmly explain the rental car process and remind Asher of all the fun we will have at RMH once we arrive.
Asher: Settles down for a bit.
Me: Does an internal happy dance. I AM Kate Middleton, minus the royal hospital step photo in a size two dress, right after giving birth. That’s just crazy!

20 minutes, 3 juice boxes and 6 snacks later…..

Me: I bet Kate Middleton has a helicopter.
Asher: Are we almost there? Are We Almost There! ARE WE ALMOST THERE!
Me: No, I will let you know when we are. Oh, look a bulldozer!
Asher:ARE WE ALMOST THERE! X5,000
Me: Now channeling my inner Ponce de Leon as I help Andrew navigate through parts of LA we are only familiar with due to our love of 90’s rap music as we avoid the 405.
Me: Asher, I will let you know when we are almost there. It is mommy and daddy’s job to get us there safely. I know it is taking a long time. Look, a giant donut!
Asher: ARE WE ALMOST THERE! X5,000
Me: Ignore x 5,000
Asher: ARE WE ALMOST THERE!
Me: Now channeling my inner Judge Judy. Asher, If you ask me again you will have to sit out from playing when we get to RMH! Daddy is driving and we need to be safe. PLEASE, stop asking that!
Asher: Silent for one glorious minute!
Asher: Are we still in the car!
Me: Face to palm.
Andrew: We just got outsmarted by a toddler.

We finally make it through LA traffic and arrive at our home away from home. Ronald McDonald house is truly THE best! If you have never had the chance to stay at one of these amazing places you are blessed. If you have, you are also SO BLESSED! If you are able to give RMH some love, please do! Volunteer to make a meal, donate consumables or a monetary amount, drop your change in the RMH box at your local McDonalds, simply call them up and ask them what they need. We hope to volunteer at Roanoke’s RMH in the future and will keep everyone posted on how you can join us in giving back to this organization.

We settled in to RMH and prepare for three days of concerts, I mean treatment visits with our Rock Star. He continues to follow the typical Rock Star M.O., freaking out, melting down right before or after his appointment, yet performing like an old pro. He charms the office staff, doctors and nurses. Everyone comments on what a cooperative patient he is.

Highlights of the show:
*Running up and down the halls with his super hero cape on.
*Eating a cupcake with real EGG (albeit quail and just the yolk). I was so excited to make a cupcake that didn’t cave in the middle once baked!
*Eating 3 teaspoons of pistachio. Asher exclaiming loudly “I like pit-a-chow!”.
*Getting bribed with new toys while challenging the dreaded Chestnut.
*Successfully challenging (Eating a large amount and exercising after)…..
Quail Egg Yolk
Chestnut
Sesame
Pistachio
*Dosing (introducing a small amount at rest)
Hen Egg Yolk
Hazelnut
Walnut

At least no one booed us off the stage:
*Eating 3 teaspoons of the dreaded Chestnut.
*By the third day of treatment Asher was done. He knew the drill and was compliant with all requests, but we were all just tired and ready to head home.

A little fun had by all:
*We got to visit Seal Beach in the OC. It was beautiful. The fat, turkey sized sea gulls were Asher’s favorite.
* Visiting Andrew’s highschool BFF Jay, his wife Jess and sister Katie. We had an amazing dinner at Jessie and Jay’s beautiful home in LA. Asher enjoyed playing all of Jay’s percussion instruments. He may be a Rock Star yet! He also enjoyed tormenting their shih tzus, hunting for cats outside and spotting wild parrots in the trees. Yes LA has wild parrots! Look it up!
*Getting to hang with Asher’s Chicago brothers Arlo and Mateo. We met them during our first stay at RMH and were so excited to see them again. Having other allergy families to share our journey with is priceless!
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Trip 2
I’ll start by saying, our child IS a ROCK STAR! He traveled like a champ, adjusted to the three hour time difference (better than mom and dad) AND wore an allergy patch the size of a piece of notebook paper (picture a giant Nicotrol patch) for 24 hours. After all of this, he completed four food challenges, which included eating large amounts of each food (coconut, pine nut, macadamia and pecan) then exercising after each ingestion to ensure that no reaction would take place. THEN returned the following day to dose small amounts of quail egg yolk, sesame, chestnut and pistachio. This was slightly easier for Asher, who got to rest between each dose while mommy and daddy’s heart rates increased as we watch with a Nurse Practitioner to ensure no reaction occurred. Asher remained a ROCK STAR throughout while I practiced my yoga breathing, prayed and asked the NP if picking his nose was a sign of impending anaphylaxis. By the way, it is not for those who were wondering.

Highlights of our trip:
TSA PreCheck is awesome sauce! We felt like the cool kids in the lunch line after checking our a bag at the Southwest counter and having the agent tell us “Now, you get to go over there thank goodness!”. To the left, TSA PreCheck: Picture shiny happy people holding hands! We were through the line and on our way to our gate in five minutes FLAT! To the right, TSA purgatory: The line wrapped around the building like Black Friday at Target! Flashbacks and slight PTSD occurred as we glanced over our shoulders and walked in the opposite direction.
Visiting the Aquarium of the Pacific. This was a great distraction for Asher while he wore the allergy patch on his back. We high-fived sting rays, had a stare-off with a penguin, spun with sea otters and poked a few jellyfish (With two GENTLE fingers of course!).
Staying at McDonald’s house again! We cannot express how grateful we are to be able to have this home away from home. Therapy dog Thursday is now Asher’s favorite day of the week and Andrew and I are carrying around an extra five pounds from all of the amazing foods made by volunteers each day.
Seeing 523,323,321 garbage trucks and having Asher squeal with excitement each time.
InstaCart! Picture ClickList that allows real-time updates as your personal shopper completes your order, you get to to choose your substitutions as they need to be made AND the ability to text your shopper and receive responses as they shop! Oh, AND you can order from multiple stores at once! Why would people with this service EVER leave home!
First visit to Trader Joe’s to stock up on all of the nuts Asher will need for maintenance and dosing. InstaCart and Trader Joe’s aren’t friends on Facebook apparently, so we had to make the trip ourselves. I will soon be petitioning to have one of these amazing stores built in the NRV!
Seeing Tan from Queer Eye walking through LAX! His hair is even cooler in person! Andrew missed this highlight and is SUPER jealous!

Lowlights of our trip: (Tan would be proud of this pun on words!)
Andrew getting poison ivy on his knee that slowly spread until I worried that amputation may be needed. A call to Teledoc, a strong antibiotic and a few trips to the Local CVS (That somehow manages to fill your script in 10 minutes, with a line out the door, while being interviewed by police who are arresting shoplifters in the parking lot.) and he is now on the mend. I will be investing in a full-body jumpsuit for him to wear while mowing.
Traveling isn’t easy WITH or WITHOUT a toddler. We got through TSA in record time again on the way home. Our food is always searched and the agent happily changed her gloves when she heard Asher had food allergies. This is where the fun ends. Toddlers hate waiting, ALOT! Let's be honest, everyone hates waiting but toddlers, especially the supper verbal ones; share their disgruntled feeling with no filter. Our flight from LAX to Nashville was delayed. We arrived super early and adding extra time to an already long wait and an Asher who thinks a 15-minute snore-fest in the rental car counts as a nap makes for a very disgruntled passenger. At one point, I calmly whispered in his ear that the flight crew wouldn’t allow him to get on the plane if he continued to yell “I don’t wanna wait in this line!” and “Let me on that plane, NOW!”.
Waiting some more, sucks! We makeup time in flight and arrive in Nashville in PLENTY of time for our now delayed flight to Charlotte. The flight continues to delay due to bad weather and we finally board our 9:55 flight at 11:15. We then wait in our seats for another 40 minutes while six passengers who are being rerouted from other flights board the plane. We then have to wait for their checked luggage as well. I’m pretty sure that at this point (midnight, Nashville time) other passengers were ready to send a collection plate around to cover the cost to have said luggage shipped. Meanwhile, Asher continues to be AWAKE and he continues to stay AWAKE until we arrive in Charlotte at 2:40 am and wait for our shuttle bus until 3:00 am AND finally load up our car at 3:20 am. He then promptly snores blissfully before we hit the interstate. We arrive home as the sun is coming up. We are currently recovering. I’m not sure if anyone ate lunch today. I do know that the older boys brushed teeth and ate breakfast (Thanks to grandma!) and a clean house and fresh sheets greeted us upon arrival. Grandma IS awesome sauce!

So, now the fun part begins! Asher will continue to eat all of his recommended foods 3-5 times per week (chicken, turkey, almond, stone fruits, apple, pear, and wheat germ). He will now add maintenance foods (pine nuts, macadamia, pecans, and coconut flour) AND dosing foods (quail egg yolk, sesame, pistachios, and chestnuts). We will slowly increase the amount of each of his dosing foods over the next two months before returning to challenge these foods and add new dosing foods. I was able to prepare all of Asher’s maintenance foods and he easily consumed these around lunch time as well as a popsicle, The nuts have protein and the popsicle was the whole fruit healthy kind. I count this as lunch, so I AM awesome sauce! He had his dosing foods (minus the quail egg) before dinner and all three did actually eat, shower and brush teeth before bed. Andrew IS awesome sauce also!

As always, your prayers and continued support are a tremendous blessing!
Please continue to share Asher's story. Each time it is shared is an opportunity for another allergy family to find hope for their child.

Love,
The Waff Pack
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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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Raised by 104 people in 8 months
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