Update 2/17/25:

Let’s get Jacob to the finish line!

It’s hard to believe we are entering our 5th and final year of treatment at the Food Allergy Institute! 

Jacob has come so far! He is freely eating eggs, tree nuts, and is up to 14.5 peanuts every day, on top of other foods that he was formerly allergic to. We already have a taste of food freedom and we can see the light at the end of the tunnel. 

If all goes according to plan, he should reach remission, aka graduation, in April 2026. That’s 5 more trips out to California. At that point he should be able to eat anything and everything without restriction. No more reading food labels. No more fear of food causing him harm. He’ll be able to go to birthday parties, sleepovers, camps, prom, dates, etc., just like his peers without having to worry about what he and everyone else is eating and whether or not it’s safe! 

As we enter year 5, we are looking at about another $15K in out of pocket expenses. That’s what we’ve averaged per year for the past 4 years. It’s  honestly overwhelming to think about and we are taking it one visit at a time as we have all along. We would not be where we are without the help of our tribe. We never even would have been able to get started without our friends and family helping us bridge the financial gap. 

We appreciate each and every one of you that has helped us and cheered us on! Thank you! 

Update 5/5/2024:

Friends and family, we need your help. 

3 years ago, with your support, we embarked on a journey to rid Jacob of his multiple severe food allergies. 

In 3 years he has come so far! I know that many of you have been following along and cheering him on as he conquers one allergen after another. I think I wouldn’t even believe it if he wasn’t living proof that this program works.

He’s eating all tree nuts, eggs, working through peanuts now… it’s incredible! He only has 2 allergens left to introduce at this point, lentils and peas, his most severe. If everything continues to go according to plan, he should graduate from the program in early 2026. So he has just under 2 years left. 

Here’s the financial reality of this program… we are spending $15-20K a YEAR out of pocket between medical bills and travel to CA. 

To break it down, we pay $2,500 once a year for lab work. $4,800 a year as a clinic fee that isn’t covered by insurance. That gets billed as $1,200 every 3 months with the next one being due June 1. $1,300 a year for a medication that helps treat his environmental allergies. $300 a year on epi pens and about $400-500 on asthma inhalers. About $800 on clinic visit copays. And that’s not taking into account plane tickets, car rentals, and accommodations. 

Over the course of a 5 year plan, that’s a college tuition!! It’s been worth every penny, but sometimes it gets really overwhelming and hard. 

We travel 3-4 times a year to appointments. We’ve been busting our butts to keep this going and we’ve been making it work one trip at a time. But right now, we can use a boost to see this through to the end. We never would have even been able to get started without the support of our tribe to begin with and we are so eternally grateful because many of you have helped change the course of Jacob’s life. 

So I’m resharing his GoFund me. I’m also brainstorming other ways to fundraise. Any little bit helps us to pay his upcoming medical bills. If you find it in your heart and have the ability to help, we would be so thankful. If you can’t help monetarily, that’s ok, please share if you feel comfortable and continue to pray for Jacob’s journey.

2/25/2021:

Friends and family, we need your help. 

As you know, Jacob has multiple life threatening food allergies. He was diagnosed at 9 months old when a jar of green pea baby food landed us in the ER. It was the scariest day of my life. Since then, we’ve had to use his epi pen 2 times, each time being completely terrifying. 

Among his many allergies are peanuts, tree nuts, green peas, chickpeas, lentils, and eggs. He also has asthma which is strongly tied to his allergies. We’ve been living with the strong possibility that these will be life long conditions for him. 

We dream of a world in which Jacob can have a “normal” life. Where he can go to a birthday party and eat the cake, not having to bring his own. Where he has sleepovers with his friends and can eat anything they’re eating without worry of being different. Where we can go to a restaurant and not have to worry about cross contamination or that the staff won’t take our situation seriously. Where as he gets older he can go to the mall with friends, the movies, camp, travel, and not have to carry this burden and the anxiety that goes with it. 

We dream of a world in which food isn’t deadly to our son. 

Enter the SoCal Food Allergy Institute. This clinic in CA, is granting children what we dream of. Complete food freedom. Complete remission of their food allergies, no matter how severe. They’ve had thousands go through their treatment with a near perfect success rate. It’s revolutionary. 

It could be the answer to our dreams!

We started looking into this program a while back from the perspective of “maybe we can move to CA in a few years to pursue it.”

It’s been a seed sitting in the back of our minds and in our hearts. 

About 2 weeks ago, I started doing more research. I started reading actual testimonials from parents whose children are currently in or have finished treatment. Many families travel with their kids from all over the country/world. Some are local to us. 

I realized that on average, they travel to SoCal about every 8-10 weeks. So 4-5 times a year max. Each trip averages 36 hours but can be as long as 5 days in the beginning stages. Most kids are in treatment for 2-4 years. Some longer. Many even make it work being self pay. It’s hard, but it’s worth the result! 

I started to think, 4-5 short trips a year isn’t completely unreasonable. Maybe we can do this!? Maybe Jacob can be free of his allergies by his 10th birthday!?

So on a whim I put his name on a wait list. The wait list has typically been 1-2 years long. Plenty of time to wrap our minds around this, plan, and save! 

Imagine my shock when they emailed me yesterday and offered an expedited start date. We can start as soon as APRIL! I immediately got anxious and wanted to crawl under a rock!

Can we do this?

Here’s where we stand being completely vulnerable and transparent: 

*Treatment is in network (a blessing) and we’ve already hit our deductible for the year. Jacob has an out of pocket max of $4000.  Which means if we start right away we can MAXIMIZE our benefits for at least the first 2 visits! 

*There’s a $4500 yearly program fee which isn’t billed to insurance.  It’s billed quarterly. We’d have to pay $1,100 when we make the first appointment. We have to come up with that quickly if we want to secure a spot. We have savings but it’s bookmarked for the summer months because Syed does not get paid for summer vacations. We need that money to live and pay bills this summer. 

*The first visit also includes labs which are out of network and billed at $3000. 

*The second trip and quarterly fee would likely fall over the summer months when again as a CPS teacher, Syed won’t be getting paid from July - September. 

*We have to consider flights and lodging for each trip. I’m already looking into programs like Miracle Flights to see if we qualify and hotel discounts. I’d like for Syed and I to both go at least the first time but likely I’d be making the majority of trips alone with Jacob. 

Are we ready to jump in? Logistically, I’m absolutely terrified. But our hearts tell us this is a sign. I’m literally shaking as I type this. Can we make this a reality? It won’t be rainbows and sunshine. It’ll be a long, tedious, journey. But the end result can be life changing for our family. 

This is where we’re asking for help. When it comes to Jacob we’re not afraid to ask... If you have it in your heart to help us make this a reality and help Jacob achieve what we’d consider a miracle, any little bit would help us get there initially! We’re already brainstorming ways to earn extra money as well.  

If you aren’t able to help, please pray for wisdom and guidance for us on this journey! 

https://www.socalfoodallergy.org/

https://lbbusinessjournal.com/bringing-math-to-medicine-long-beach-allergy-institute-plans-to-add-sites-build-new-campus