When you think of multiple sclerosis you probably picture adults dealing with the disease, but did you know there is actually a growing number of children who battle MS every day?
That number includes Hampton Roads and North Carolina.
8,000 to 10,000 is an estimate of how many children in the United States have MS according to the National Multiple Sclerosis Society.
It’s an earth-shattering diagnosis that can be hard for an adult to wrap their head around. So what if you’re a teen?
What if you’re the teen’s parents?
Read on to learn more about how the Samonte family from Virginia Beach found a way to cope and thrive after their daughter’s diagnosis.
“I was 16 and it was last year, January 5,” says Esabel Samonte.
Esabel remembers the exact date when she began her journey to a shocking diagnosis.
“I noticed it because when I was in class my right eye was getting blurry.”
After a trip to the pediatrician and then an ophthalmologist, the Samontes headed to the emergency room for an MRI.
“I was expecting to get, like, eyedrops and my eye would be fine, but then I found it was something way more,” says Esabel.
This athletic teenager was a great student at Landstown High School. She was focused on college and getting her driver’s license. At the same time, learned she has multiple sclerosis.
“I was like ‘Oh am I going to be able to drive?’ And then definitely, like, sports. I was wondering if I could still, like, be active and do the things I usually do.”
“You go to worst case scenario. You do. You go to ‘What happens to her now?’ says Esabel’s parents, Ricarde and Veronica Samonte.
The two were terrified for their child.
“I’ve never fell to my to my knees before and I fell to my knees that day,” says Veronica. “I didn’t think she could go to college anymore. I didn’t think she could have children anymore. I didn’t think her life would be normal.”
Normal. Can you have that with MS?
“My neurologist is like, ‘Do everything normal.’ He said don’t do anything different. He basically just said, ‘It’s a new normal.'” says Esabel.
But try as she might, nothing this teenager did felt “normal.”
“For the first, probably like 3 months, I wasn’t happy, like, I was just scared.”
Esabel had a lot of learning to do. According to the National MS Society, multiple sclerosis is an unpredictable, often disabling disease of the central nervous system.It disrupts the flow of information between your brain and your body.
“I was like, ‘Oh I’m just going to be tired all the time. You know, maybe I’ll be in a wheelchair, like I don’t know what’s going to happen.'”
As Esabel tried to focus on her future and the what-ifs, her medication arrived.
“When my shots came in I was really, like, ready to break down.”
It was a reality that was just too real for the then 16 year old to handle.
She admits her grades began to slip. She stopped caring about school — but her friends rallied.
“They were very supportive, like, ‘If you need me I’m here’ and that was very, that was cool of them to do that.”
She is getting used to her medication, an injection, and the side effects that come with the drug.
“I do injections every two weeks. So, I take them on Saturdays so I have Sunday to kind of recover because sometimes I get, it’s like a 50/50. They give me … flu-like symptoms or I can have nothing.”
No matter what, Esabel and her family surrounded themselves in love and positivity.
“Don’t be afraid to talk about it. Any kind of support you can get, you know, take it,” says Ricarde.
“Everyone just came to us to help us and her friends were there for her. Her school was there for her,” says Veronica.
It took some time, but Esabel picked herself up. She and her family formed a Walk MS team and marched for the cause through Norfolk last year.
“I had all of my close friends and family there,” says Esabel.
This teenager may be one of the young faces of this disease, but she is so much more than MS, and she refuses to let it stop her from reaching her dreams.
“Honestly, she, I consider her my superhero,” says Veronica.
To learn more about pediatric MS, click here.