Following your musical dreams with Wolfram Syndrome

Meet Clara Steuart who has Wolfram Syndrome.

Wolfram’s affects Clara with Diabetes Mellitus, severely sight impaired, fatigue, sensorineural hearing loss, partial Diabetes Insipidus, and recently mobility issues.

Clara’s main instruments are the piano and saxophone, however she can play the didgeridoo too, which she taught herself.

Clara plays the saxophone at her local church, St Mary’s in Twyford, she plays as part of the Sunday service team twice a month.  Clara also belongs to the school orchestra and takes part in Christmas concerts, Spring and Summer concerts and Remembrance services.

Clara has been attending general music classes since the age of 3 years old. She learnt to play the recorder all through junior school, and she has been learning the piano and saxophone for the past 5 years (with a bit of a hiccup due to Covid lockdowns).

Clara has an amazing private music tutor who has taught her to play by ear, as she hasn’t been able to see music for the past 3 years.  He is also supporting Clara with her GCSE in Music.

Update – 24th June 2025

Clara has been offered a place as Saxophonist for the London National Open Youth Orchestra Ensemble! It was something Clara really wanted and was nervous waiting to hear. She will shortly receive her rehearsal dates and musicians agreement and will start in September.

Below is a video of Clara playing ‘This is Me’ on the piano at Waterfall House.

Information sourced from Mum Nicola. Words are Nicola’s own.

Being Artistic and enjoying boxing with a Vision Impairment

Meet Jennifer Lynch who has Wolfram Syndrome.

Jennifer has an extreme version of Wolfram Version. She is affected by Diabetes Insipidus, Neurogenic bladder, Diabetes Mellitus, severely vision impaired, hardly any vision remaining, mobility issues, ASD, mobility issues, memory issues.

Jennifer has always enjoyed arts and crafts. She made badges and gift cards to sell at school. Using Acrylic paints and other textured materials she created a variety of paintings which were used to make a WSUK charity calendar in 2019 along with a Christmas card design and bookmarks. All sold to raise funds for WSUK.

As Jennifer’s vision deteriorated she changed her way of painting to ‘messy painting’ blending colours and shapes on the canvas using brushes and paint rollers.

In 2023 Jennifer’s painting style has changed again. She is now producing art pieces using fluid/pouring paints. Jennifer can be involved in this by choosing the colours, helping to pour them into the cup and then pour the paints over the canvas before starting to tip the canvas to move the paints over it. These paintings she has created are all unique pieces, as they can’t be re-created, and are all for sale on the shop page on this website, with a video of Jennifer creating her artwork. Wolfram Syndrome UK

Just because Jennifer’s sight has failed it hasn’t stopped her creating art and doing the other things she loves such as cooking and boxing.

Jennifer started boxing 2 years ago when she started to attend the gym at her Day Services. She would look forward to these sessions twice a week and got her own set of gloves and mitts for her birthday in 2022. She has been known to do a 160+ punches in 60 seconds. The person wearing the mitts also gets a good workout to ensure that Jennifer’s punch meets the mitt each time.

Written by mum, Tracy Lynch.

Being a Black Belt in Ju Jitsu is my dream. I won’t stop until I get all the way to the top!

Bringing martial arts to life.

Meet Mohammad Saif Zulfiqar who has Wolfram Syndrome.

My name is Mohammad, but everyone calls me Saif. I have been attending Ju jitsu since I was 9 years old. I go to two different classes. One class I go to every week and one every other week. Because of my hard work and determination, I am now a black belt in Ju Jitsu. I have to wait until I turn 18 until I can get the second half of my grading to have the full black belt.  

I like Ju Jitsu very much, the teachers are kind, and they understand me. I am severely sight impaired and hearing impaired. But that doesn’t stop me. I go to Ju Jitsu with my dad and my mum is very proud of me.  

I enjoy getting out and doing it, my sight impairment has never stopped me from getting my black belt. Here are some photos of me, that I am really proud of.  

Information sourced from Saif and Mum, Tahira.

Keep Calm and Carry on: Jay’s inspiring path.

Meet Jay Jenkins who has Wolfram Like Syndrome

Jay is 13 now and was born with bilateral/profound hearing loss. By the age of 2 he lost all of his hearing and was bilaterally implanted (cochlear implants)

We were unsure as to why Jay was born deaf so agreed to have genetics involved from an early age which has taken almost 8yrs to get to the bottom of.

Jay was registered as vision impaired at the age of 6, he has bilateral stellate cataracts and bilateral optic neuropathy.

Jay was diagnosed in December 2024 with Type 1 diabetes. He is now on an insulin pump after 6 months of injecting insulin.

Diagnosed early 2025 with Sweets Syndrome, presenting with skin lesions to his lower limbs, joint pain, swelling and stiffness.

Diagnosed early 2025 with Wolfram Like Syndrome (heterozygous WFS1c gene variant – de Nero variant)

Each diagnosis has brought a grief cycle with it. Why him! I will never know the answer to that question but we move forward every day, taking each day as it comes.

Jay is now in year 8 of a mainstream comprehensive school with a hearing and vision impaired unit attached (a 30mile round trip journey each day) and is doing amazing. It’s taken a lot of battles, heartache and knock backs to get him to where he is today.

Jay is a green belt in taekwondo (he’s actually stopped doing that now as he didn’t want to fight against girls!)

He’s a level 6 swim England swimmer, previous to his diabetes and sweets syndrome he played in a local football and basketball team. It was his decision to give them up as the pain and lesions from the sweets syndrome got too much for him.

In August 2024, Jay was nominated and won an Outstanding Award at County Durham Youth Awards. The Judges also decided to present Jay with the Anne Jackson Award, an additional accolade created in memory of Anne Jackson, a supporter of the Youth Council which recognises young people who show a special commitment to others. Jay has since become an active member of County Durham Youth Council.

We’ve just recently celebrated his 11th hearing birthday which we do every year.

Jay has in the past year joined the combined cadet forces within his school and he absolutely loves it. He’s recently completed a 2-day fire arms training course and has had his 1st 24hr field exercise where he learned skills of putting a tent up, polishing his boots and many more tasks required to get him through the training exercise. We had a few issues with his blood glucose levels and he was quite upset that he couldn’t take part in some of the activities due to this but it’s been a learning curve for him. In June this year he will complete a full week’s training at an army barracks and he will be away from home for the full week. Although in the future, he won’t be able to join any of the forces due to his diagnosis’ the future for Jay is today and tomorrow and each day as it comes.

He was given the opportunity to go to Paris on a school trip last year, he was very keen to go but then his insecurities of his diabetes got the better of him and pulled out of the trip. His confidence has been at the lowest point that I could never have imagined but I will never give up on being his number 1 cheerleader. He has put his name forward with school to hopefully go to New York in late 2026, even if he doesn’t get a place as they are limited, the fact that his confidence has given him hope that he can do it, without me, is inspiring.

He has input from the local authorities educational Phycologist and is currently undertaking a drawing and talking therapy course in school to help improve his confidence and allow him space to express his emotional health and wellbeing without me present. He has the best support in school and has an EHCP which I fought tooth and nail for but we got there in the end.

I wanted (with Jays permission) to share his story with parents and children/young people who are maybe recently diagnosed with Wolfram Syndrome, just to show his determination and that there’s hope for everyone going through what he is going through. Jay is and will always be my “hearo”

Don’t give up, your child/young person and you are worthy and deserving!!