Sharing my story isn’t something I ever thought I’d do. It’s way out of my comfort zone, but I’ve chosen to share it because I want to spread awareness, and I hope the information will be of benefit.
My daughter, Faige Malky, is an adorable three-year-old with Down syndrome. When she was around fifteen months old, at the beginning of Covid, we started doing therapy sessions for her on Zoom, as therapists couldn’t make in-person visits.
During one session, her OT, Lynn, noticed that Faige Malky’s head dropped for a second.
“What was that?” she asked me, concerned.
I explained that recently, Faige Malky had started having this interesting reflex when she was startled — she’d drop her head for a second. Initially, I’d been worried about it, but the pediatrician said it was fine, so I didn’t give it much thought.
“I think you should check with a neurologist,” the therapist said. “I’m concerned it could be a seizure.”
A seizure? No one I’d mentioned it to thought it could be that — seizures are usually longer than a second. But to be on the safe side, I started inquiring about good neurologists and how to get an appointment. The first available appointment was three months later.
When I told the OT, she suggested I speak to another mother, whose child had similar symptoms that were ultimately diagnosed as seizures.
I followed through, and although this child’s symptoms were different, I heard enough to realize that Faige Malky’s head drops actually could be a seizure disorder. And with seizures, early detection is critical — and we’d already missed that boat.
“Chaim Medical advised us to take our child to the ER when we suspected seizure disorder. Immediate treatment is vital to prevent long-term damage,” the other mother told me.
I called Chaim Medical, and they urged me to take Faige Malky to the ER. We headed to Columbia Hospital, where they placed an EEG along her scalp to detect if there was seizure activity.
I told them that the seizures often came when she was startled.
“Try to startle her, let’s see what happens,” they said.
I went behind Faige Malky and picked her up without warning. She startled, and her head dropped.
The doctor confirmed that during the head drop, the brain showed seizure-like activity. She was diagnosed with infantile spasms, a form of epilepsy that typically affects babies, and involves brief spells of tensing or jerking.
Seizures of this kind are usually short — one to two seconds — as opposed to other seizure disorders, in which the spells last from thirty seconds to two minutes.
There are a few standard treatments for infantile spasms, including hormone therapy, steroids, and a medication called vigabatrin. In this case, the doctor suggested the third option, and started Faige Malky on the lowest dose of the medication, instructing us to increase the dosage gradually.
Baruch Hashem, after starting on the lowest dose, the head drops stopped completely. I didn’t want to increase the dosage if it wasn’t necessary, so the day after being discharged from the hospital, the team at Chaim Medical helped me get an appointment with a top neurologist.
Dr. Orrin Devinsky is a neurologist and the director of the NYU Comprehensive Epilepsy Center, and I’m so grateful we were able to see him. When I shared my concerns about increasing the medications, he agreed with me.
“Don’t increase the dose, continue with the dose you’re using now, and we’ll monitor the situation,” he said.
He also told me that, interestingly enough, children with Down syndrome who have infantile spasms often outgrow them quicker than other children do.
“See?” I said. “Down syndrome rocks!”
Baruch Hashem, after six months of Faige Malky being on the lowest dosage of the medication, with EEGs every two months to check for seizure-like activity, we were able to take her off the medication, and that saga was behind us. Chasdei Hashem, it was such a relief to be able to do that.
But if we thought we could finally relax, we were mistaken. Soon, we were thrust into an entirely new challenge — this time, with Faige Malky’s vision issues.
Once again, it was Lynn, her OT, who caught the problem. And this itself was tremendous Hashgachah pratis: Why would Lynn, an OT, have such detailed knowledge in this area? And yet, she did — because several children she worked with had CVI (cortical visual impairment) and she was determined to help them as best she could. Wanting to deepen her expertise, she even paid out of pocket to take a course on the topic, ensuring she could provide them with the support they needed.
She did that training just in time to realize that my daughter had CVI.
It was again during a Zoom session when Lynn realized that Faige Malky wasn’t looking at a toy that was right near her. When Lynn mentioned her concern to me, I felt like my world had come crashing down. Faige Malky was already delayed because of her Down syndrome, we’d finally finished with the infantile spasms — and now this? A lifelong struggle with her vision?
Had I known then how much help was available and how much my daughter could progress in such a short time, I wouldn’t have felt so devastated.
Right away, we began researching CVI. It appeared that because the seizures hadn’t been diagnosed immediately, there was some brain damage affecting the visual pathways, resulting in CVI.
This condition means that while the eyes themselves are structurally fine, the brain doesn’t properly interpret what they see. CVI can have various causes, including lack of oxygen, seizures, infections, or head injuries.
It’s difficult to diagnose since a standard eye exam typically appears normal, even though the child struggles to see properly. They may perceive colors swirling around them, but without meaning — because the brain isn’t processing visual input correctly.
CVI progresses through different stages, ranging from very limited vision to near-normal eyesight. Faige Malky started at the lowest level — she couldn’t even see the toys around her. As I began researching ways to help her, we learned that children with CVI can be guided through specific phases to improve their vision.
In Phase 1, the goal is to teach the brain to see. We focused on helping Faige Malky look at objects so her brain could learn to process them visually. We discovered that children with CVI respond more easily to metallic objects, movement, and light. Suddenly, it all made sense — was why Faige Malky had always been so captivated by light!
Usually, children with CVI show a preference for a certain color. For Faige Malky, it was red; when her clothing had some red, she would look at it.
Thus began what we called the “red movement.” We bought everything in red — a red bowl and spoon, a red towel, red metallic items to hang around the house, the works.
We also asked a dayan about getting her an iPad with specific apps that could help improve her vision, and this helped her tremendously — she could look at it for hours, while looking at other things was a struggle.
We were lucky to be able to schedule a Zoom appointment with Dr. Christine Roman-Lantzy, an expert in CVI who has developed materials and treatment plans to help children with this impairment.
She confirmed the diagnosis, and told us that since Faige Malky was now recognizing and reaching for red objects, she was up to Phase 2 — object functioning, using the abilities she’d developed in Phase 1 to teach her to actually use objects she was seeing. For example, we’d put red tape on the keys of a toy piano to get her to actually play it.
Dr. Roman-Lantzy recommended that we follow up with one of her students, Chris Russell, a CVI specialist. He was incredibly kind and helpful, traveling to our home to conduct a full evaluation of Faige Malky. Afterward, he provided us with a detailed written report outlining his findings and recommendations. With the help and recommendations of these experts in the field, we saw rapid improvement. In just eighteen months, Faige Malky went from having almost no vision to seeing almost everything — so much so that I sometimes forget that she has CVI!
Yes, it’s a lifelong journey, but tremendous improvement is possible. And I’m so grateful to Hashem for sending Lynn at just the right time to catch this and begin working on it, allowing Faige Malky to regain her ability to see.
To understand how unusual this is — most therapists aren’t familiar with CVI, and even some ophthalmologists are unaware of it. When we took Faige Malky to an ophthalmologist after she had reached the second stage of CVI (where she was already able to focus on specific objects), the doctor dismissed the diagnosis, saying, “There is no way this child has CVI. Children with CVI can’t see anything, and there’s nothing that can be done to help.”
That simply isn’t true. I want to urge anyone who suspects their child may have CVI to reach out to an expert — because so much help is available!
Recently, I arranged for Chris Russell to visit our neighborhood and evaluate five children whose parents had concerns about their vision. Two were diagnosed with CVI, while the other three were able to rule it out with confidence and clarity. He has since recorded an extensive explanation of CVI, diagnosis protocol, and treatment guidelines, on the Hamaspik hotline. You can read it here as well.
I’m grateful to be able to pay it forward, to help other families find clarity in the darkness, just as Lynn did for us and for Faige Malky.
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