Wolfram Syndrome Patients
Please get to know some amazing members of our Wolfram syndrome community and their inspiring journeys as they bravely face the challenges of this disease.
Alex Bieser
You won’t find a more charismatic and generous 16-year-old than Alex Bieser!
At just 6 years old, Alex faced the challenge of being diagnosed with Wolfram Syndrome, following his earlier diagnoses of Type 1 Diabetes and Optic Nerve Atrophy. This condition has progressed more rapidly for Alex than for many other children with Wolfram Syndrome. Every day, he learns how to tackle and rise above his difficulties, striving to live as normal as possible.
Despite the struggles he endures with his mental health and the complexities of his condition, Alex’s journey can sometimes feel quite isolating. Thankfully, he’s created an excellent support system of caring doctors, therapists, counselors, and teachers, genuinely transforming how he views his life. Through their help, he has developed better coping strategies and communication skills and is growing more optimistic and resilient .
With his huge heart, Alex loves helping others and bringing joy to those around him. After graduating high school, he aspires to follow his passion for hair styling and cosmetology.
Brooklyn Reeves
Brooklyn is an outgoing, lovable and silly 8 year old. She passed her newborn screenings but when she wasn’t talking at 1 year old her parents started to question if she possibly had hearing loss.
After 6 months of speech therapy and several inconclusive office tests, she was sent to Washington University Children’s Hospital to see an audiologist. It was determined that day that she had severe hearing loss and she was fitted for hearing aids. Over the next year her hearing loss declined further and she became a candidate for Cochlear Implants which she received at the age of 3.
Her parents wanted answers so they asked for genetic testing, assuming it would probably come back with no genetic link. But, when the results came back they found out Brooklyn had Wolfram-like syndrome. Wolfram-like syndrome typically presents less severe effects, but they are still life altering. There isn’t a lot of research on her variant as there are only 4 other known cases in the world.
At age 4 Brooklyn was diagnosed with optic atrophy. Her parents and medical team are monitoring her vision and she visits with an endocrinologist regularly to monitor for type 1 diabetes, typical of wolfram syndrome.
Thankfully, for now she has not developed type 1 diabetes. Her vision issues have progressed and now require correction. Her parents are continuously monitoring Brooklyn as she has now entered public school for the first time. Brooklyn is a light to those around her and she finds joy in every day through her fun personality. She approaches each day and all experiences full of wonder and love.
Caitlin Fess
Hi! My name is Caitlin. I’m 27 years old, and I was diagnosed with optic atrophy at age 12 and diabetes at age 14. I was diagnosed with Wolfram at age 15. I suffer from a little bit of vision loss and color loss and diabetes mellitus but not insipidus. I also suffer from some depression and anxiety.
I started playing soccer and dancing at the age of four and continued both for years, continuing with soccer through college. This helped me stay active and helped my diabetes a lot. I started working when I turned 16 and am still working now. I started waitressing full-time, and now I’m working as a bank teller part-time while raising my son. I was worried about being able to have children, but I gave birth to a perfect little boy who turned 2 in June!
I haven’t let my diagnosis stop me from what I want to do. I think it has made me a stronger person. I’m also lucky to have a wonderful family and supportive friends who understand and help me no matter what.
Danny Flexer IV
At age 3 ½ years, Danny Flexer IV was diagnosed with type I diabetes mellitus. At age nine, Danny’s optic atrophy began, and at age 10 in 2019, Danny was diagnosed with diabetes insipidus, chronic gastritis, and Wolfram syndrome. Danny’s high-pitched hearing has been affected. However, he can hear just fine at normal levels.
Danny’s Wolfram diagnosis in 2019 clarified many questions about Danny’s previous health and behaviors. Wolfram has caused short-term memory loss, heat intolerance, high and low blood sugar levels, sleep issues, headaches, chronic gastritis, bladder issues, anxiety, and three grand mal seizures before his Wolfram diagnosis, resulting from low blood sugar levels.
Danny’s short-term memory loss is especially noticeable in the frequency with which he misplaces things. Due to heat intolerance, Danny has slept with a fan directly on him in controlled air conditioning for 12 months. Presently, at age 15, Danny’s range of vision is 10 feet.
These Wolfram side effects are incredibly happening inside a seemingly perfectly healthy 15-year-old like Danny. Although Danny handles his health issues daily, he is also highly optimistic. He enjoys many hobbies, including gaming, swimming, and collecting swords and knives. Danny has about 15 swords and at least 50 knives in his collection, many of which are displayed in cases.
On several occasions, in response to Danny’s serious medical crises, Dr. Fumihiko Urano has been the only doctor able to explain the situation and how to handle it. Danny’s family is grateful for The Snow Foundation’s support of Wolfram syndrome research. Dr. Urano’s and The Snow Foundation’s dedication to Wolfram syndrome research gives HOPE that effective gene therapy will soon be available globally for all Wolfram syndrome patients.
Jennifer Lynch
Jennifer Lynch, from the UK, was diagnosed with WS in 2010 at just 8 years of age. She had many different symptoms leading up to her diagnosis from about the age of 18 months, which made it difficult for the other doctors treating her to discover what was wrong. She has had everything apart from hearing loss happen to her within the first 10 years of her life!
As a small child, Jennifer was always uncomfortable, anxious, upset, and easily agitated with new or unfamiliar surroundings or people. On Mother’s Day in March 2007, she was diagnosed with Cyclo-Rotational Nystagmusand being long-sighted. This is what kickstarted her journey to a diagnosis. At the beginning of 2008, Jennifer was diagnosed with early-stage Type 1 Diabetes and with a Neurogenic Bladder, which meant signals were not getting sent correctly from the brain to the bladder. Due to complications from severe coughing and choking episodes, Jennifer needed a tracheostomy in March 2012.
In 2015 it was noticed that Jennifer was starting to get forgetful and was diagnosed with short-term memory loss as well as being on the Autistic Spectrum, which answers a lot of questions about behavior from when she was younger. It gets frustrating when you are asked the same question 7-8 times within an hour, but as with everything else with WS, you learn to deal. Jennifer has now lost all of her vision. She was registered as SVI in 2009. From age 6, she learned Braille and how to touch type. Jennifer never lived a normal social life like most young adults her age. She had to be accompanied everywhere she went, not just because of the vision issues but also because of the ongoing care needed for the Tracheostomy.
In February 2020, the family was informed that the Local Education Authority wouldn’t finance a further year at the college that Jennifer attended, so they would have to look at alternatives. In February 2021, Jennifer started to participate in a Day Service provider 2 days a week to try to bring some routine back to her life, especially after shielding since March 2020 due to COVID-19, as well as to give her something to do. Attending Day Services stopped in April 2023 after Jennifer was put on full-time ventilation after a severe chest infection. This has affected her mobility, but it hasn’t affected her sense of humor. Also, in 2023, Jennifer had two new ‘body piercings’ to accompany her Tracheostomy. She had a supra-pubic catheter inserted in January and a feeding PEG inserted in May as her swallow was becoming too unsafe. She continues to be a strong young lady with a wicked and dry sense of humor.
Nick Pagan
At the age of five, I was diagnosed with type 1 diabetes mellitus. Then, at six, while visiting an ophthalmologist, I discovered I had optic atrophy. The doctor noted my diabetes and informed us that there are only two possible causes for optic atrophy. Learning that I didn’t have a brain tumor led to a conclusion of Wolfram Syndrome. Along with this, I faced high-frequency deafness and diabetes insipidus, which was once described as DIDMOAD. My parents were encouraged to take me home and to focus on giving me the best quality of life possible, as life expectancy was estimated between 18 and 20 years old.
Now, at 32 years old as of August 31, 2024, I navigate life as blind, hearing impaired, and managing both diabetes mellitus and insipidus, along with low testosterone. Despite facing challenges like low sodium, which have landed me in the hospital numerous times, I never let these obstacles define me. I proudly completed four years of college, earning a bachelor’s degree in communication with a concentration in public relations. Since 2015, I’ve enjoyed working part-time at a supermarket.
Additionally, I hold a 4th-degree black belt in Tae Kwon Do and have taught it to others, even after being told that I could “never do contact sports.” An audiologist once suggested that music might be challenging for me, yet I often play the guitar, ukulele, and keyboard, and I love performing on open microphone nights. I’m part of a band, and I write music and lyrics. Traveling to visit friends across the country by Greyhound, Amtrak, or plane is something I cherish, and I’ve built a wonderful circle of friends and a vibrant social life.
During my six months at the rehab center for the blind in Daytona Beach, Florida, I learned valuable skills like orientation and mobility, cooking, computer navigation, and independent living. Since returning to my hometown in March 2018, I’ve embraced independent living and tried to keep my place clean and neat.
I maintain a positive outlook on life, and it’s hard to bring me down. My life motto is, “Don’t worry; be happy!”
Victor Carnel
Victor is a lively 15-year-old who proudly calls Norway home. With dual nationality, he embraces both his Belgian and Norwegian roots. In 2014, Victor faced the challenge of being diagnosed with Wolfram Syndrome, but he never let that dim his bright spirit.
An incredibly talented athlete, he shone as a promising tennis player until vision issues led him to explore football and dancing, eventually discovering a true love for swimming. His weekdays are busy, juggling time between the international school and honing his skills in the pool. Victor is an exceptional student, achieving top marks and fluently speaking four languages! On weekends, you can often find him competing or training in swimming. His ultimate dream? To make it to the Paralympic Games in 2028 in sunny Los Angeles! He’s excited to join the local top sports school next year to get one step closer to that dream.
Although he understands his condition, he’s so focused on his passions that he hardly thinks about it. In our family, we joke that he’s more concerned about his braces, the nose he broke, and his toenails than anything else! Victor’s positive attitude in facing challenges and living fully in the moment inspires everyone around him.
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