Benjamin Heller's Medical Fund

          Benjamin Heller is a 5 months old boy from Jonesboro, Arkansas. He is the son of Aaron and Lynzee Heller and the little brother of Madelyn. Benjamin has been diagnosed with a rare seizure disorder: Cryptogenic Infantile Spasms. The cause of the seizures are unknown. But we do know that his condition can be treated with medicine. We also do know that his young brain shows no signs of permanent damage and if he responds well to treatment, he will be a normal, healthy little boy.



          His medicine is very, very expensive. It costs $36,000 a vial (Yes, $36K!!). And Benjamin is expected to need at least 4 vials! The Heller’s have health insurance, but they are still going to be left with a huge medical bill for little Benjamin’s treatment. They are expected to spend $15,000 out of pocket with their deductible and copays.

           We can’t imagine the stress of seeing your baby go through something like this. If that wasn’t enough, the cost of the treatment puts a huge strain on their finances. And that is not the first time they have gone through something like this. In 2014, Aaron was diagnosed with kidney cancer.  Aaron is fine now, but they are still paying the bills from his cancer treatment.

          That’s where we come in! We can help Aaron and Lynzee during their stressful and scary time. Let’s show the Hellers some love by helping them cover the costs of Benjamin’s treatment.

         Let’s help them with thoughts and prayers… and action.

         No amount is too small and every donation is much, much appreciated.



           Here’s a detailed account of Benjamin’s situation written by Lynzee, Benjamin’s mom:

Our Sweet Benjamin has always been a very happy baby; only fussy when very hungry or tired. On April 7th and 8th he started getting unusually fussy, but we blamed it on teething. On the morning of April 10th, I was eating breakfast with my 2 year old daughter in our kitchen. Benjamin was playing in his rock-n-play sleeper when I noticed that he made a weird movement, kind of like a startle reflex. I thought the rocker must have rocked a bit and it scared him. The movement was him throwing both arms out really fast to the side and flinging his head forward with a terrified look on his face.

I didn't think anything of it really until he did it again the next day while in the his swing. That night my husband Aaron was playing with him in the bedroom. All of a sudden he yelled for me saying he was having the spasms. Benjamin kept spasming over and over while crying uncontrollably.

The spasms finally stopped and we decided to take him to the ER where we waited 6 hours to see a doctor. The ER doctor she said his ear was a bit red and because of that he may be off balance and that may be causing the strange movements. She put him on an antibiotic and said to follow up with his doctor.

Call it Mother's intuition, but I knew he didn't have an ear infection and I hated to put him on an antibiotic so young, but we did. The next day we went to his pediatrician, but the nurse practitioner saw him instead. She agreed that it was probably an ear infection and continued the antibiotic. She saw the video we had taken of him doing his spasms and said it did not look like seizures. She told us to continue the antibiotic and after the 10 days if he was still having the spasms we would maybe contact a neurologist, but she didn't see a need for that at that point.

Again, I was very skeptical because he was nursing fine and also sucking on his pacifier fine. I just didn't think it was an ear infection. A few days later the spasms got way worse. He started have 2-3 clusters a day with 10-20 spasms in each cluster. Talk about scary!!! He was having them in the car, watching tv, waking up from a nap, going to sleep, playing and so on.

After several days, I noticed the spasms were 9 seconds apart. Aaron thought that sounded like seizures and decided to google it for the first time. He found an article describing what was happening that included a video of a baby doing the same spasms as Benjamin.

It was called Infantile Spasms. (Don't look it up unless you want to get freaked out) It is a very scary disorder. It is super rare, a  pediatrician may see one case in their lifetime if that and it was said to be seen worldwide maybe 2500 cases a year. My husband called me back and said:  “I know what is wrong with him and it's not an ear infection and what he has is very serious we need to get him help now!”

We called his doctor's office and they didn't have an open appt but we went anyway. They got him in and his doc saw our videos and the internet videos and and still didn't think much of it, probably because he wasn't familiar with it.

We pushed and pushed until he finally got up to make a phone call. He came back and said he got us admitted into Le Bonheur Children's’s Hospital. We went home, got a bag, and were on our way.

He had several more episodes at the hospital, including one episode that had 39 spasms in a row. I think I cried more in this last week than I had ever cried before.

He had an EEG and MRI and the doctors confirmed he did in fact have Infantile Spasms. Essentially, it is a seizure disorder with chaotic brain waves. The seizures and brain waves can prevent normal brain development, delay or stop development, and over time can cause permanent damage.


They said we caught it incredibly early. A lot of times this goes undiagnosed for months and, if untreated, it can cause brain damage and cognitive regression in their development.  Benjamin's MRI was absolutely normal which means there had not been any brain damage!

They started him on a medicine called a ACTH. It is a shot that we give him twice a day. The first few days he was on it he did have some seizures but for 3 days he has been seizure free. I feel like I have my sweet, happy baby back.

We will give him the ACTH shots once they send us home and Benjamin will come back on May 3 for an EEG to see if his brain waves are going back to normal. He will then come back every six months until he is around two years old to make sure his EEGs are staying normal. Later in life he is more likely to get another seizure than just a normal person.

We are grateful for all of the thoughts and prayers.