Jewish student with rare syndrome beats the odds

As Jews, we think of miracles at Chanukah when the oil lasted for eight days instead of one. We also think of miracles when the Red Sea parted, allowing our ancestors to continue fleeing Egypt even after the Egyptian army began pursuit.

It’s a sure bet that another miracle will be celebrated at the Blanks family seder this year. They will celebrate the health of their 17-year-old son Noah.

Why are they celebrating Noah’s health? In December, they were told he had a rare syndrome where most patients either die or become completely paralyzed. Noah, however, is getting stronger every day.

‘Life changed forever’

This story begins on Nov. 3 in Bloomington, Ill. Noah, a member of Congregation Beth Torah, said his “life changed forever” while he was attending the NFTY Missouri Valley Fall Chavurah. As ruach chair (a fundraising vice president), he was running around doing all the things an officer needs to do when getting ready for a program when he suddenly blacked out for a few seconds.

“When my mind came back together, I didn’t have any feeling from the hips down,” he said.

Noah “didn’t freak out” right away because he had had some difficulties before relating to a cyst he has in his lower back. But he did think he should tell his mother, Shari Blank. He texted her, relaying that he didn’t have any feeling in his legs. Shari called him immediately, insisting he contact his doctor, Jonathan Jacobs, M.D. Dr. Jacobs instructed Noah to go to the hospital in Bloomington.

Noah spent about a day in the Bloomington hospital, but the doctors there couldn’t diagnose the problem.

“They sent me home,” he said. “I had no feeling in my legs at all. I couldn’t walk at all.”

By this time Noah’s parents, Shari and Mitchell Blank, had arrived in Bloomington to be with their son. They drove Noah back to Kansas City because the doctors didn’t think it was a good idea for Noah to fly home.

Noah’s health continued to deteriorate during the eight-hour trip.

“On the car ride home I lost all the feeling in my left arm and on the right side of my face,” Noah said.

Noah’s mystery paralysis began on Saturday, Nov. 5. He was back in KC in time to keep an appointment he coincidentally already had with a neurosurgeon on Monday, Nov. 7.

“That doctor had no idea what was wrong, either,” Noah said.

He was then referred to a neurologist. Noah said he was in extreme pain and was having difficulty getting an appointment with the neurologist, so he decided to pursue a different strategy.

Noah is friends with Jason Arkin. Jason’s parents both happen to be neurologists. So Noah called Jason and explained the situation.

“I did not want to wait five days to see a neurologist when I couldn’t walk and I was in extreme pain,” Noah said.

Six days after the initial paralysis began, Nov. 9, Karen Arkin, M.D., admitted Noah to St. Luke’s South. He stayed there until Nov. 13.

“Those were the longest five days of my life,” he said.

Noah underwent a multitude of tests including MRIs, brain scan, CAT scan and spinal tap. He was also placed on IV steroids.

After Dr. Arkin consulted with a spinal cord expert in Dallas and a week after the mystery began, she diagnosed Noah with a very rare syndrome known as fibro cartilage embolus. It’s generally only found in children and adolescents.

According to Dr. Arkin, there are discs in between the vertebrae in the spinal cord. During adolescence there is a fluid pulp inside the discs. A little piece of Blank’s fluid disc material got out into the arteries that supply his spinal cord with blood. It went to three different places in his spinal cord. These caused Blank to have three small strokes in his spinal cord.

In every other case she’s researched, the patient has either died or stayed completely paralyzed. But she believes Noah will make a complete recovery and never experience this again.

Noah’s recovery

Noah had been diagnosed and was able to leave the hospital, but he wasn’t well.

“I was talking so slowly you couldn’t understand me. I had a little feeling back in my legs but I was not walking well at all. Then about three or four days after I got home from the hospital I had totally reached a plateau,” he explained.

A few days after his release from the hospital, he was to begin physical therapy.

“I was so bad when I went to physical therapy. My physical therapist said right off the bat I needed to go back into the hospital for in-patient rehab,” he said.

It was now a month after the initial paralysis began. He began in-patient rehab on Dec. 3 and was released after a week on Dec. 10.

Five months later, he still wears a bioness machine on his right leg. It’s made in Israel and he said it’s awesome.

“It’s literally electrotherapy,” he explained. “I have a gate sensor on my knee and the bottom of my shoe and automatically when I take a step the machine sends a message down my nerves and my foot pops up so I don’t drag my foot on the ground when I walk.”

Even today, Noah said he still battles horrible migraine headaches. When he has those migraines, he said his “speech totally slows down.” It was around mid-January before he felt his mental state and his speech “started totally coming back.”

None of this was easy for the Blue Valley Northwest senior.

“When I first got home from the hospital, I became completely depressed,” he said. “I was crying and I was totally out of it.”
He said his family and friends were there to support him every step of the way.

“My friends came over every single day after school. My house at times was packed with friends, which wasn’t always good because I was always feeling sick,” he said.

Dr. Arkin said Noah handled everything very maturely.

“Most teenagers would be crying and rude. Noah was gracious to every single person who came into his room. He knew them by first name and even sat at the nurses’ station at night visiting with them,” Dr. Arkin said.

“It was such a joy to see him get better,” she continued. “I told his parents they should be proud of the way they raised him.”

Academic achievements

Noah returned to school with the rest of his classmates after winter break and has been attending regular classes. But now he gets extra time on assignments and tests because his cognitive ability and his organizational ability aren’t totally back yet.

Yet he was mentally sharp enough to compete with his school’s “We the People” team that won the Kansas state competition on Jan. 31. A group of about 17 from Blue Valley Northwest will travel to Washington, D.C., for the national competition April 27 through May 1. That’s an accomplishment that made his grandmother, Sue Miller, extraordinarily proud.

One thousand high school students from the 50 states, the District of Columbia, and the Commonwealth of the Northern Mariana Islands will participate in We the People. The three-day competition on the U.S. Constitution and the Bill of Rights will be held on the campus of George Mason University and in U.S. House of Representatives hearing rooms on Capitol Hill. Since the inception of the We the People program in 1987, more than 30 million students and 90,000 teachers have participated in the program.

“We get very well versed in government. We read books and study Supreme Court cases …,” Noah explained.

Noah will also graduate with his class in May. He is in the process of deciding where he wants to go to school and has narrowed his choices to University of Michigan, American University in Washington, D.C., DePauw University in Greencastle, Ind., or the University of Southern California in Los Angeles.