Consort local pioneering potential Cystinosis cure

Barbie Kulyk stands next to her son, Jordan Janz as his manipulated stem cells are administered through an IV and syringe on Oct. 8, 2019 while in hospital in San Diego. Janz is the first in the world to be treated for cystinosis. ECA Review/Submitted
Terri Huxley
Written by Terri Huxley

Scientist Dr. Cherqui stands next to Jordan Janz as his manipulated stem cells are administered through an IV and syringe on Oct. 8, 2019 while in hospital in San Diego. Janz is the first in the world to be treated for cystinosis. ECA Review/Submitted

Jordan Janz of Consort has been through a busy few months between treatments, chemo and transplants.

The 20-year-old is the first in the world to be treated for a potential cure to cystinosis, a rare condition he was diagnosed with at only eight months old.

He was transplanted with a complicated stem cell treatment on Oct. 7, 2019 and has been steady ever since. The hope is to stop the progression of the disease or even cure it.

Cystinosis is a rare genetic, metabolic, lysosomal storage disease caused by mutations in the CTNS gene on a certain chromosome which results in an abnormal accumulation of the amino acid cystine in various organs and tissues of the body such as the kidneys, eyes, muscles, pancreas and brain.

In July 2019, doctors took some of his stem cells and sent them to the University of Los Angeles (UCLA) to be modified by changing a gene that would potentially fix his condition.

This was then sent to the University of San Diego (UCSD).

He went home for two months before returning in mid-September. Janz was admitted to the Jacobs Hospital in San Diego on Oct. 1 where he went through chemotherapy and was given the new cells administered through an IV with a syringe.

“They had to do it super carefully so they didn’t wreck any of the cells,” said Janz. “It was basically a waiting game after that. We are still waiting to see if it works or not. I’m stable right now, can’t really say if it is working or not working because we don’t know that.”

“I wasn’t allowed to go outside, I wasn’t allowed to leave the floor because I have a low immune system so the first four days I just sat there in my room and every 12 hours they gave me a round of chemo,” described Janz.

He mentioned that he did not feel the effects of the treatment until a week later when he could no longer stomach food, lost his hair and 10 pounds of body fat.

“But I gained it all back easily,” said Janz.

Janz used to take 58 pills a day whereas now he is off of them to see if the treatment is responding properly and if certain levels are showing normal.

In April, he will go back down south for a week to see if everything is working.

If not, he will return to his normal medication.

Going into this procedure, Janz was given all the possibilities and risks associated with this procedure.

“There was like pages and pages of risks because before I had to go into this I had to read all the things that could possibly happen, all the things that wouldn’t happen, what could potentially happen if it works, what could happen if it doesn’t work. There was like so many risks I couldn’t even name them all. Risks that I would not be getting but they had to put them in the form just in case it did happen,” explained Janz.

Janz has been answering non-stop phone calls, texts, cards and even gifts from people in several different countries like Brazil, Australia, Turkey and Iraq.

“I went to San Diego with one bag and then I came home with three just for myself because I had so many gifts and cards,” he continued.

Consort has also been extremely supportive of the 20-year-old in more ways than one.

Jordan’s sister is an employee at ATB Financial in Consort. A Facebook page was created where 20 to 30 families offered to make meals so that Jordan’s father and siblings were given three square meals a day on Monday, Wednesday and Friday.

The meals were dropped off at the bank before making their way to the family.

Members of the local bank created a Facebook page and supplied three square meals a day for three and a half months while Janz and his mother Barbie Kulyk were gone.

Sandra Kulyk was originally Coronation’s Chief Administrative Officer but took over a position at Barbie’s work to allow for her to travel with her son.

“So without her also we wouldn’t have been able to leave for San Diego,” he said.

Janz employer, T&E Pumps based in Consort has also stepped up to the plate by continually paying him a wage while he was away.

“If they didn’t keep paying me while I was gone I probably wouldn’t be able to go to San Diego so everything just really fell in place for me,” he said.


Terri Huxley

ECA Review

About the author

Terri Huxley

Terri Huxley

Terri grew up on a grain farm near Drumheller, Alberta with an eye for the beautiful and uncharted. Living in such a unique and diverse area has helped her become the photographer and reporter she is today.

Coming from the East Central region getting this newspaper on her dinner table growing up, it helped her understand the community she now serves.

In May 2019, Terri was awarded Alberta Weekly Newspaper Association (AWNA) Canada's Energy Citizens Photographic Awards Sports Action – First Place as well as first for the same sports action image nationally with the Canadian Community Newspaper Association (CCNA). Fast forward to 2020, she has won second in the same category for the AWNA.