Following an initial, unwieldy diagnosis of MOGAD, six-year-old Blake was two years into a treatment plan where she was given multiple courses of chemotherapy as the “only way… a last resort” to clear a lesion that covered 80% of her brain.
For two and a half years, this precious young girl suffered from excruciating optic neuritis, and was in and out of hospital almost weekly. Six months into chemotherapy, after many other treatments, nothing improved.
Her family saw only one path forward: seek a second opinion in hopes of finding a treatment that might actually work.
This is their story and message to others: please seek out second opinions.
How Things Began: Being Told She Was Faking
“Blake was the happiest little girl you’ve ever seen,” her grandmother Tina recalls.
Then, in April 2023, barely four-years-old, something strange happened: She kept getting “curdling, excruciating” eye pain. Her family took her to the emergency room, hoping for answers.
Instead, they were faced with objections… again and again.It was a pattern that followed for weeks — only to be told that Blake was either fine or, worse, even faking it.
As the pain continued, Blake changed. She became withdrawn, emotional, and prone to angry outbursts. She needed quiet and screens to cope, which was completely unlike her usual active, outdoorsy self.
“We were told the best we could do was to bring Blake back to the hospital when she was going through a sudden attack,” explains Tina, “so that’s what her mom, Mikael, did in the end. She sat in the parking lot of the hospital and then when Blake screamed, they ran her in.”
At last, Blake was seen by an eye doctor and diagnosed with optic neuritis.
Blake underwent spinal taps and spent two weeks in hospital on IV antibiotics, but she was sent home without any other medication. Although she made a short-term recovery, it wasn’t long before she was back in hospital again…and again and again. By this stage she was suffering with severely weakened vision — the family uncovered (which is difficult to determine from a four-year-old) that the colors she saw were no longer correct.
19 MRIS And Finally A MOGAD Diagnosis
In July, Blake tested positive for MOGAD.
“We were told not to worry as this was probably just a one-time thing,” adds Mikael. “But within a few weeks we were back.”
The hospital visits soon became more and more regular. Mikael and Tina became regulars, taking Blake into the emergency department, where once a month trips soon became nearly weekly. The family felt helpless, but they were left with little choice other than to trust their medical team.
The severity became clear when doctors and nurses would come into the room and admit they had expected Blake to be unable to walk or talk based on her MRIs. When the family was given access to the MRI results, they saw Blake’s brain had one big lesion in a huge cluster that took up 80% of her brain.
Over the course of two and a half years, Blake endured tremendous adversity. She had 19 MRIs, many spinal taps, countless scans, and had received a variety of different treatments. Nothing seemed to be working. The regular attacks continued, and the lesion didn’t decrease
Through Facebook community groups, the family heard about other MOGAD patients on monthly IVIG who had much better results than Blake, yet she was not offered this medication.
Chemotherapy, the Turning Point
“With my background in medicine, I know to go for second opinions, and my gut was telling me to go for a second opinion,” explains Tina. “When we were being told that Blake wouldn’t have IVIG, we wanted a second opinion, but since she was always so sick, we simply couldn’t get her there. These places were at least five hours away, and any appointments were months and months away.
“We were being told to try different treatments by our hospital and at that point you don’t have the bandwidth; you’re all just trying to survive.
“When you are told something by your medical team, you feel inclined to trust them – what else could Mikael do for her daughter?”
The turning point came when Blake was put on a dose of chemotherapy. She was three months into the treatment and about to start another three months.
“The final straw was chemo,” Mikael says.
“We were told that if we don’t put her on chemo, Blake would need an injection through her spine and the doctors explained they didn’t know how that would go in terms of future disability; we were told that the lesion would never be gone and they were at a stage where they were ‘just trying to save her brain.’”
The chemotherapy was grueling, with both immediate side effects and long-term consequences, like possible infertility.
Finally Getting Help
“I spoke to the Chief Media Officer for The MOG Project, Jim Broutman, who said our story was breaking his heart,” recalls Tina.
Before long, Jim had secured Blake’s family a call with The MOG Project’s U.S. Medical Advisory Council member, Dr. Jonathan Santoro at Children’s Hospital Los Angeles. Within two weeks, Blake traveled seven hours to be seen by Dr Santoro’s colleague, Dr. Laura Saucier.
“She begged us to stop the chemotherapy, I’ve never seen a doctor quite so emotional and passionate,” Tina says.
“Dr. Saucier showed us so much data and reassured us that they have many MOG patients and that IVIG is the best course of action. Initially Blake went in monthly for the IVIG, but it’s now carried out by a nurse at home.
“Looking back we are just so thankful to Jim. I call him Blake’s walking angel; I don’t know what our lives would be without him and his support.”
Relapse-free for a year
“Blake is back in school and things are so good with her now,” Mikael beams.
“Like all children with MOGAD, she has her ‘crazy days’ and we have to figure out what’s going on. She struggles with the fatigue and the trauma of what she has been through, but overall she is doing fantastic and her latest scan in January showed that nearly all of her lesion has gone, which was an extremely emotional day… we just cried and cried.”
Blake’s story is a powerful reminder: second opinions can save someone’s quality of life and even change the course of a disease.
If you or a loved one is navigating MOGAD, you are not alone. The MOG Project is here to help connect you with resources, experts, and a global community that understands.
Learn more, explore patient resources, or get support at mogproject.org — and don’t hesitate to advocate for the care you deserve!
I’m so happy for your family!
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