In James's Promise, 2-Year-Old Vienna Stroke Survivor Finds Support

VIENNA, VA — When James Shahryary was born alongside his twin brother, Lucas, in August 2019, a stroke that led to bilateral hemorrhaging had him fighting for his life. While Lucas was a perfectly healthy baby, doctors told Paige and Tom Shahryary that James might not make it.

After James was whisked away following delivery, the worried parents waited until the early morning hours to see him. It was at that time Tom Shahryary made a promise to James that he'd do everything he could to help him if James would live. So James's Promise was born. James, now 2, has kept his promise and continues to live despite being left blind, nonverbal, immobile, unable to eat by mouth and experiencing other medical issues.

"That first night, we were just like, stay with us, and we promise we'll take care of the rest of it," said Tom Shahryary.

"So whatever resources he needs, whatever therapies he needs, like anything and everything, we'll take care of as long as he keeps fighting with us and survives," added Paige Shahryary.

To help keep that promise to James, the Vienna family started a GoFundMe page, raising tens of thousands of dollars for different therapies and treatments. The other main fundraiser is James's Promise Run on Nov. 7 at Nottoway Park in Vienna, allowing the community to get to know James and his family.

A fight for life at birth

James' fight for life started when he arrived early with his twin, Lucas, at 31 weeks. Paige Shahryary recalls having a healthy pregnancy, and James was fine up until the delivery.

"[His] heart rate was fine. He wasn't in distress or anything. So it was a complete shock," said Paige Shahryary.

When James was delivered, he wasn't crying. Tom Shahryary wasn't worried at first, until James' brother Lucas came out screaming. James was immediately intubated and taken away, while the parents got to see Lucas.

"The doctors came and said you guys should prepare to essentially go home with one child, which was very hard to hear," said Tom Shahryary.

The outlook was initially positive after his first MRI a few days after birth showed he might have trouble with walking or eating. But an MRI a month later showed 90 percent of his brain was damaged, and a neurologist said his condition would continue to deteriorate.

The parents ultimately learned James had an ischaemic hypoxic stroke during the severing of the umbilical cord. That led to a hemorrhagic stroke, which caused brain bleeding. In his short life, James has had more surgeries than most babies: a patent ductus arteriosus closure surgery, G-tube placement and two brain surgeries along with other treatments and therapies.

James was able to come home in December 2019, about a week after he first breathed on his own. Paige Shahryary called it a "huge adjustment," as they were not only new parents but now had to learn how to take care of James without the hospital care.

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Just a week after the two brothers were reunited for the first time since birth, Lucas got sick with RSV and had to be hospitalized. While Lucas got out in time for Christmas, the family decided to spend the holidays by themselves and introduce the twins to their family the following spring. But by that time, COVID-19 had hit the U.S., and the James continued to deal with other medical challenges.

A medically complex life

James' medical challenges have not only jeopardized his life but also his development. James' lack of a functioning hypothalamus has an impact on the functions of his thyroid, kidneys, secretion and pituitary gland, which results in the loss of reflexes babies normally get at birth or develop over time. For example, James lost the reflex to lay with one arm up, which is the precursor to learning to roll over. That's just one of the reflexes he has to work on through therapy.

The appearance of infantile spasms further challenged his development. In 2020, James began experiencing infantile spasms, a type of seizures that regressed him back to an infant state. That meant progress on James pushing himself up, lifting his head up and having progress with his vision was erased.

Paige Shahryary said infantile spasms can look like a baby being startled, so some parents might pass it off as something not serious. But hearing from families in similar situations in Facebook groups motivated her to get James checked out.

"Social media actually played a big part, because they let us kind of know what to look out for hearing full personal experiences, and that's where we got a lot of questions to ask the doctors. ... As much as we tell our story, you're not truly going to understand unless you lived through yourself," said Paige Shahryary.

Due to the infantile spasms, James was put on steroids that Tom Shahryary described as a "dosage that you would give a person two times my size." The medication gave him stomach problems and caused him to regress on progress to switch from bottle feeding to eating by mouth. The medication also caused an enlargement of his heart, so he was ultimately switched to a new medication.

James also retains more fat on his body due to the steroids as well as his hypothalamus issue. Paige Shahryary said he only gets 90 calories a day, but hypothalamic obesity causes his body to not burn fat the way it should. That also challenges his progress on therapy to redevelop skills.

Even as James made progress with treatment for infantile spasms, other medical issues have arisen. For example, when the parents began noticing his eyes rolling around and unfocused, Tom Shahryary took him to the hospital. An MRI found James needed surgery due to cysts in the right side of his brain causing pressure on his optic nerves.

"Every time he starts progressing, it's like another hospital stay. And that sets them back. Because it's if he's not using his body, we're not continuing these therapies, then his body slowly starts losing it," said Paige Shahryary.

James' deteriorating eyesight has been one of the factors delaying his development progress. The initial stroke damaged his optic nerves, and he suffers from cortical vision impairment, which means his brain doesn't send signals to interpret what he's seeing. Paige Shahryary describes the condition as seeing "bits and pieces of an image, but your brain can't form it together."

"So when James was looking at times, his eyes would scan back and forward like almost like an old school Xerox machine. Trying to put all the images together. So we got used to that," said Tom Shahryary.

Despite spending approximately half of his life in hospitals, progress at therapy provides a positive outlook for James. For example, he does speech therapy to learn how to communicate by pressing buttons on his toys. The speech also has a goal of helping him learn to eat by mouth. He's also made progress in therapy to work on the rolling reflex.

Another therapy James uses is MNRI, which involves movements, massages and touches to stimulate his reflexes. Tom Shahryary said this therapy shows his reflexes don't disappear completely but rather go away until they-re reactivated.

James may not be able to communicate as a normal child would, but he has another way to let his parents know how he feels. The first time he smiled as an infant was when they removed his breathing machine.

"And that was the first time that he smiled. That was his telling us like look, I can breathe now, I don't need all this stuff. And that was his way of just letting us know," said Paige Shahryary.

According to his parents, James also loves spending time around children even if he can't be interactive. Perhaps his biggest fan is Lucas, who plays with him, puts toys in his hand, lies with him and kisses him.

The family's unwavering support for James has helped him get treatments and therapies even when insurance cannot cover the costs. Last year, fundraising supported the following treatments or therapy for James: $15,000 for a stem cell transfusion in Germany, $4,000 for two rounds of MNRI intensive therapy, $4,000 for hyperbaric oxygen chamber treatments.

In 2021, fundraising has supported $2,000 for daily therapies for three months, MNRI treatment in November, and the hyperbaric oxygen chamber in December. Ongoing fundraising, including James's Promise Run, will support $2,000 for intensive therapy in February 2022 and $2,000 for May 2022, $12,000 in the yearly daily therapy costs not covered by insurance, and $15,000 for a second stem cell treatment in August or September 2022.

James's Promise Run

The idea for James's Promise Run originated from Phoenix Athletix Club in Vienna, which a relative of the Shahryary family owns. The gym has organized an annual charity run for several years and held the first one to benefit James in 2020. The event raised enough for the family to get a device that helps his developing on standing.

The Shahryary family believes this year's event will be even bigger. The 5K run and walk will begin at 8:30 a.m. Nov. 7 at Nottoway Park. Anyone can register to participate on Nov. 7 or virtually on their own. Residents may also participate by donating or volunteering for the James's Promise Run. All proceeds benefit therapy and medical expenses as well as special needs equipment for James.

At 7:45 a.m. before the race, the family will speak about James' story and pediatric stroke awareness. A children's 1-mile fun run will precede the 5K at 8 a.m. Lucas will be one of the fun run participants, while James will ride in the stroller during the main event.

As word has spread about James's Promise Run, the Vienna community has shown their support. Strangers have reached out to the family, and local businesses have pledged support as race sponsors. One of the top supporters has been Inca Social owner Fito Garcia, whose restaurant has held fundraisers for James and is covering the cost of race shirts and bottles.

James' parents see the fundraiser run as a way for the community to get acquainted with him.

"We want James to be a familiar face in the community," said Tom Shahryary. "When they see him, they say, 'That's that tough kid. That's the warrior. That's the kid that's been through so much and has never quit.'"

People can follow along with James' story on the James's Promise Facebook page.