Hi, I'm Susan, and I'm Samantha's mom. I am her caregiver, her mother and her biggest advocate. And she was diagnosed with EOE at around four years old.

Samantha is now 18 years old and she's about to head off to college. And this has been a long journey, and we've learned a lot along the way, but it's very important to support her and speak for her when she was younger but also teach her the tools so she can use her own voice to advocate for herself as she moves on in the world.

Our journey with EoE began in about 2007. So, she was about one year old. I had noticed that she was just vomiting randomly.

It was a stressful time for my husband and I because having a baby that's throwing up randomly is nerve wracking . . .

At the same time, we were also dealing with breathing issues, which turned out to be asthma, and she also had a reaction to lentil beans.

So, we delved into the world of food allergies as well. Eventually the doctor, the pediatrician, put her on a rescue inhaler for her breathing issues and also a PPI for the vomiting.

When Samantha was having breathing issues, we went to the E.R. multiple times. After one hospital stay we just decided that we needed to seek out the advice of a pulmonologist. And after those visits, they determined that putting her on a daily maintenance inhaler really made a lot of sense.

It was a really challenging time because I didn't know anyone that was dealing with these three problems at the same time . . . But I felt like I needed to find the specialist that would help us the most. So we researched and talked to different doctors and did as much work as we could on the ground to figure out like how to best help our daughter.

And I'm very fortunate that my father's a research scientist, so he could help understand some of the science behind the medications that were being recommended and help me understand what was going on.

We first took Samantha to a GI at a little over one year old, and at first they agreed with the pediatrician, and we kept her on a PPI to help manage her symptoms . . .

. . . The pediatric GI also told her to avoid, told us to avoid more acidic foods like fried foods or tomato-based foods to help alleviate any potential reflux symptoms.

And the combination of that, watching her diet and using the PPI, really helped her symptoms. Her vomiting was much more infrequent.

But after more conversations, they really said to see what's going on, we really would need to do an endoscopy.

We first allowed an endoscopy, I believe at around 4 or 5 years old. I think the doctor probably suspected she had EoE and from doing a little bit of research online, I kind of thought the same thing, but obviously I didn't know for sure.

And after doing the first endoscopy, that's when the pediatric GI confirmed that she had EOE based on her high eosinophil count.

When Samantha was first diagnosed with EOE, I suppose I felt a little bit of relief because at least I knew for sure what was wrong and what was causing all these random and unpleasant symptoms.

When Samantha was younger, the liquid steroid was really the main treatment that was recommended, at least to us, at the time.

. . . We mixed it with what the doctor had recommended.

So, with a combination of the liquid steroid and not eating her certain allergens, we kind of managed a normal routine. I mean, obviously she was a toddler, so I had to mix her medication daily and give it to her, but it wasn't so bad.

As Samantha has gotten older, she's taken over taking her medication. Of course, as her mom, I will still remind her and sometimes I'll leave it out for her. But overall, she knew as we're heading towards college that this is something she needs to manage by herself. And at one point when we were switching around some of her medications and some of them weren't working… we had a new prescription.

She didn't want to take it. I think it was a little bit of medical fatigue. She just was tired of taking so many medications. She was tired of going to the doctor and she just took a break. I couldn't force her to take the medication, but when she realized the symptoms were coming back, that's when I realized we really need to find something that fits better into her life.

Samantha is afraid of needles, so we have to make sure that any medication she takes avoids the use of needles.

So we're just trying to figure out what made the most sense for her . . . We know what didn't work for her in the past, and we know what fear she has when it comes to medicine, so we had to take all that into consideration and just looking online and looking through APFED . . . I found out about EOHILIA.

When I found out about EOHILIA I thought it seemed like a good solution for our family.

At one of our pediatric GI appointments . . . I discussed it with the doctor, knowing that some of the other medications hadn't worked, that maybe she wanted to move to something that was a little easier to do, as she's going to be a busy college student and doesn't want to have lots of parts and pieces around to deal with on a daily basis.

And then when we discussed it with the doctor, I felt like and Samantha agreed that it seemed like a good solution, and we hoped that it would work.

My daughter's GI explained that EOHILIA is a 12-week oral treatment for EoE for people 11 years and older. She said EOHILIA is a liquid-like form of the steroid budesonide specifically formulated for the esophagus and that it comes in a pre-mixed packet. She also discussed the risks with us, such as high levels of corticosteroid medicine in the blood, and educated us about more common side effects, including respiratory tract infections.

And she emphasized letting her know about any side effect that bothered my daughter or did not go away.

EOHILIA has helped Samantha’s symptoms improve much sooner than we expected, but we know that she has to stay on the medication for the 12 weeks.

EOHILIA has been really helpful for our family because it makes Samantha's morning routine easier and it's very convenient for her to take as a teenager on the go.

When the pediatric GI first prescribed EOHILIA for Samantha it initially wasn't covered by our insurance, but I advocated for our family and worked with both the insurance company and our doctor's office, and we did get it covered.

We also signed up for an EOHILIA copay card, and when I brought that to the pharmacy, it helped make EOHILIA much more affordable for our family.

I'm really proud of how we've handled this journey. It's been a tough journey from the start because EoE wasn't something that was talked about when she was one year old and people didn't know about it as much.

But I'm proud of myself for being such a strong advocate for Samantha. And as Samantha has gotten older, I'm really proud of her for being such a strong advocate for herself. I also feel very fortunate that we have a wonderful family that's very helpful and also a wonderful team of health care providers that's really helped us along this journey.

For other families that have a child or a teenager living with EoE I would tell them that I understand them and that I know it's a hard journey to be on, but that they know their children best and they are the best advocates for their child, and that together with their health care team, that they can find a great way for their child to be successful and healthy and happy.