Courage

Sometimes lessons of courage come from the smallest of humans.  Anthony was only 7 years old when we discovered he had an eight-centimeter AVM in his brain!

Six months prior to this discovery, Cure HHT had published guidelines on how to treat pediatric patients with HHT. At the time, Anthony was being followed by our local pediatric hematologist. The guidelines recommended baseline MRI/CT around 6-7 years old.*

On a Thursday afternoon during a routine MRI, we found out Anthony had a life-threatening AVM in his brain. Immediately following the MRI and seeing the results, the radiologist told us he was going to be transported to the nearest Pediatric Intensive Care Unit.

Fortunately, I had been dealing with HHT most of my life and knew he did not need emergency surgery. Yes, I am the parent who passed along the HHT gene.

Cure HHT helped put us in contact with Dr. Andy White, who was hundreds of miles away from our home. Dr White and the staff at St. Louis Children’s were wonderful and calmed our nerves. Over the next eight years, Anthony had four brain surgeries, three seizures, and multiple angiograms all performed at St. Louis Children’s Hospital.

Anthony never let his disease affect his personality, hopes, or dreams. Anthony has been in several school plays, sang on Broadway, runs cross country, participates in speech and debate…all while keeping a 3.25 GPA.

Finally, on June 14, 2019 we found out Anthony has normal blood flow in his brain. No more surgeries! Our family is so thankful for St. Louis Children’s Hospital well as Cure HHT.
If it were not for the excellent medical care Anthony received from Dr. White and his staff and the invaluable resources provided to us through Cure HHT’s patient advocacy, Anthony might not be here.

Now onto normal teenage activities like driving, attending school dances, and looking for a good college fit!

Note from St. Louis Children’s Hospital HHT Clinic Coordinator

Lynne Sekarski, MSN, RN, CPN

At the time of Anthony’s first visit, he walked into the clinic asymptomatic, yet he had a large brain AVM that was undetected. Anthony’s story is a prime example of why we recommend early childhood clinical screening.  We are so pleased that Anthony is doing well.

To learn more about the staff and services available at the Washington University and the St. Louis Children’s Hospital HHT Centers of Excellence, log onto our website at:

https://directory.curehht.org/hospital/washington-university-school-medicine

*We anticipate that newly published HHT International Clinical Guidelines that will include pediatric screening to be released in June 2020.