January 31, 2023

Filipino Guardian

Sentinels of Filipino Free Press

Vaccination not only protects you, but also my vulnerable children

As said to Nicole Audrey Spector

Nothing is permanent.

Tomorrow might bring a step back instead of a step forward.

Optimism is the only sensible choice.

Celebrate the victories.

These are just some of the things I am continually learning as a mother of two children with special needs. I also always keep in mind that everything can change in a flash and leave you in a world that feels weird and upside down.

That’s what happened to me and my family.

It all started when my oldest son Carson (now 11) was just over a year old. We noticed that his movements and abilities did not match those of other children his age. After several visits to the doctor, he was initially misdiagnosed with cerebral palsy. His symptoms seemed to worsen significantly after he developed a low-grade fever a few months later. It was like his body went on pause and didn’t respond to the “play” button.

It was only after several frustrating years of visits to specialists and many rounds of genetic testing that he was later accurately diagnosed with MEPAN Syndrome, a genetic neurological disorder. MEPAN is a progressive condition that gets worse over time, and is so extraordinarily rare that there isn’t even a Wikipedia page for it. In fact, there are only 13 registered cases worldwide.

About a year after Carson was born, our second son Chase (now 10) was born. He also has MEPAN syndrome. Both he and his brother are on the heavier end of the MEPAN spectrum and are struggling seriously because of the condition. No one can sit, stand or feed themselves. They are both in diapers and use a wheelchair and walkie talkies as they cannot speak.

But Chase and Carson also have amazing strengths. You are bright, engaged and imaginative. They are excellent communicators and can achieve more with their custom-made tablets than most of us could ever dream of with our smartphones. And they are cognitively equal to other children their age.

Also, they have pretty great parents.

It may sound boastful, but you simply won’t find people more knowledgeable about MEPAN Syndrome than my husband and I. And we’re committed to shedding more light on the disease, which is why we created the MEPAN Foundation, a non-profit organization dedicated to advancing scientific research to discover treatments that benefit our sons and other patients with MEPAN contribute to a better quality of life. This is important because there are currently no approved treatments for MEPAN syndrome.

There’s really nothing we wouldn’t do for our boys, but there’s only so much in our power. For some things – like protection against certain preventable diseases – we have to rely on others.

Both Carson and Chase have received all vaccines available for children their age, including those against Covid. But as long as others remain unvaccinated, they are at risk.

Now you may say, “But they are vaccinated. If they get Covid how bad could it be?”

To which I say, “Do we really need to find out?”

If you recall, it was just a mild fever, which is believed to have triggered the most severe of Carson’s symptoms.

Doctors suspect that Carson and Chase are immunocompromised due to their highly sensitive systems. Personally, I have always worried that it will take them longer to get over a virus due to their severe disability. My concerns have intensified amidst Covid which has been reported to have long term effects in children including pain, anxiety and depression.

What would these symptoms mean for kids like Carson and Chase who are already struggling with so many other health issues? And what would a serious illness mean for caregivers like my husband and I who work so hard to stay afloat while we care for our young ones? Our grooming shifts are endless, and so many nights we’re glassy-eyed and irritated as we walk past each other in the hallway when one of us wants to check who’s fallen out of bed.

Our marriage is strong, but 24/7 nurturing takes a toll on even the deepest and healthiest bonds.

The effectiveness and safety of vaccines should not be up for debate, and yet conspiracy theories, like deadly viruses themselves, continue to spread. I’ve met them firsthand.

I try not to judge others based on their beliefs because I believe that everyone can and should make their own choices, even if they are choices I (or science) disagree with. But choosing not to vaccinate your children against preventable diseases is not just a misinformed belief, it is a potential threat to children like mine.

It’s true that Covid hasn’t affected children as badly as adults – but it has still affected them. Over 16,000 children have died from Covid. Other diseases are even more unforgiving towards pediatric patients. Measles, for example, claimed 207,500 lives worldwide in 2019, and most of the fatalities were children.

It’s hard to get people to change their minds, and I don’t expect to change many people’s minds. But maybe just one person who doubts vaccines thinks about my boys and all the caregivers out there – and then thinks again.

This resource was created with the support of Merck.