Mother's Instinct: Mom Uses Social Media to Verify Baby's Rare Disease

Photo: (Photo : See page for author, Public domain, via Wikimedia Commons)

She followed her mother's instinct, and thanks to social media, her daughter now has a fighting chance against a rare form of cancer.

She first noticed a glow in her daughter's eye

On July 30, Jasmine Martin from Knoxville, Tennessee, noticed a glow in her 17-month-old daughter's eye. "It was like a moon," she described. Speaking to Good Morning America, she said she already noticed that glow before, but it was small then. However, on that day, it was noticeably big.

She felt that her daughter, Sariyah, needs to be seen. So she took her to a pediatrician who then told her that it was nothing serious. But nothing that the doctor told her could reassure her that she has nothing to worry about.

   
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 Last Thurs I noticed the glow in her eye was drastically larger and looked like a white hole. I’ve noticed it over the past few wks but it was small, and only showed at certain angles. I regret it now, by not thinking anymore of it. I just had a feeling she needed to be seen. Her dr got her in and said it was nothing serious. She said they’d just done an eye exam at her well check, but they did another one. She said her red reflexes were good, and googled stuff on cloudy eyes. I still wasn’t reassured, call it a mother’s intuition I suppose. But she referred her to an ophthalmologist. However, she let me know it would take weeks if not longer. The next part of the story is nothing short of a God story. A doctor/friend from work saw the photo I posted and messaged me. She reached out to an eye doctor and she wanted to see her immediately Monday(today).All weekend it felt like I was just holding my breath. “She has a tumor in her eye, and there’s a lot of seeds in the back.” It was like I was sitting outside of my body in that moment. The rest was a blur, and friends from work walked over and played with riyah while I talked with the doctor. St.Judes wants us there today, so we can meet with a doctor that specializes with retinoblastoma in the morning. She said I need to plan to stay for a week. I’m scared, confused, angry heartbroken and everything else. I’m upset her pediatrician said it was all fine, but now I know they just don’t see it that often. When this is over I’ll do my best to make sure there’s more awareness and education, so that all parents will be taken seriously should they ever notice it in their child’s eyes. Out of 14yrs of working in the hospital I’m always the one making appointments. I’ve seen parents completely undone as doctors have delivered heartbreaking news. But today it’s appointments being made for my own child, it’s me coming completely undone. We are on the way to St.Judes & have childcare set up for now. Unfortunately Jeff will still have to travel back and forth, but he’s staying with us as much as he can. We have no clue what to expect until the mri, so please just pray for her. Sariyah Rose is a fighter. A post shared by  Jasmine Martin (@raisingthemartins) on Aug 3, 2020 at 1:29pm PDT


She took to social media to seek advice

Her mother's intuition led her to post a photo of Sariyah on Facebook and looked for advice. A friend from work saw the picture and sent it to an eye doctor, who contacted her and said she immediately saw her daughter. And so they visited the doctor's office and found out that her little girl has a tumor in the eye.

They then went to St. Jude's Children's Research Hospital to speak with a specialist. Sariya was diagnosed with bilateral retinoblastoma - a rare eye cancer that often develops in children before reaching five and can affect one or both eyes.

While she wished she could have caught it sooner, she was unaware and so uneducated about this disease. "But THIS is why I won't stop raising awareness," she wrote on Facebook, "because I was completely unaware, and I don't want another parent to live with this kind of guilt."

Read also: Gene Replacement Treatment Restores 8-Year-Old Boy's Vision

Sariyah is now undergoing chemotherapy, and people "wouldn't even know she is going through this," she said. Jasmine added that her daughter would even play with her siblings, even when it makes her sick.

On Facebook, she wrote, "... she's still so spunky and full of life. It's like she's telling me she's going to be okay. She inspires me so much to keep taking it all one step at a time."

"I get chills knowing I physically looked her tumor in the eyes, and now I physically see it shrink. We are in the right direction, and I'll cling to that hope."

In late September, doctors found a spot in Sariya's left eye. At the time, the doctors were not sure it is also a tumor or something else, but they told them to prepare for the worst - it could put her at risk of losing vision in that left eye. However, she refused to think about that possibility and instead tried fixing her vision on the "One who is good."

Days ago, they received good news: all tests came back negative for the spot in her left eye. "We are still on the right track," she said, "and just taking it one day at a time. But today, I'm rejoicing in the good news!"

"Follow your instinct."

She said she would continue to advocate and do the best she can to grow through what they are going through. Not for her, she said, but for other kids like Sariyah.

"I STILL stand by the main message. Follow your instinct. As parents, we are our children's greatest advocate! Don't stand down, stand up, and keep going until you find someone that will listen."

Read next: Boy Born Without Brain Now Thriving After Parents Refuse Advice

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