Our campaign ‘More than you can imagine’ focused on raising awareness of leukodystrophy by sharing people’s experiences of the condition. Throughout the day we shared words from our community members, team members and wider community.
They were shared on this page and also shared on our social media platforms:
Our CEO, Sara Hunt, has shares her experience of leukodystrophy. Her two sons were diagnosed with adrenoleukodystrophy (ALD), the most common of the leukodystrophies, in 2001. Her son Alex sadly passed away in 2012. Her son Ayden had a successful Bone Marrow Transplant.
Leukodystrophy is more HEARTBREAKING than you can imagine
“Words cannot begin to describe the utter despair a leukodystrophy diagnosis can bring – the loss of what should have been, the pain of watching loved ones fade away, the inability to save them.”
Georgia’s son, Myles, is affected by 4H leukodystrophy. She shares her experience of the mobility difficulties Myles has been facing.
Leukodystrophy is more FRIGHTENING than you can imagine
“My son can no longer crawl without crawling into walls, tables. He has to look down at his hands to keep focus. He face plants the floor from a 4 point position when he tries to move. He sits on the floor on his knees because he cant put his legs in front of him. He’s never walked let alone ran now it’s trying to take crawling away from him.”
Our Fundraising and Communications Officer, Fiona, shares her experience of her living with the condition. Her Mum, Bronwen, is affected by ALSP leukodystrophy.
Leukodystrophy is more UNPREDICTABLE than you can imagine
“I think that’s the hardest part, not knowing what’s next or how mum’s condition will progress. I am constantly on high alert for any new sign or symptom, trying to work out what is an emergency and what we can manage at home. It’s difficult learning to live alongside something that can change things forever at any moment, then again, and again.”
Jordana Holovach, Head of Communications & Community at Myrtelle shares about her son’s diagnosis of Canavan disease.
Leukodystrophy is more DEVASTATING than you can imagine
“It felt like the world was collapsing around me when my son was diagnosed with Canavan disease. My natural maternal instinct was to save and protect, but I was initially crippled by the terror of what my child would have to endure. I spent a week after his diagnosis grieving the life I had dreamed about and began reshaping those dreams into my mission for a cure. “
Kerrie’s son, Dude, is affected by 4H leukodystrophy. She shares her family’s experience of learning to live with Dude’s condition below.
Leukodystrophy is more THIEVING than you can imagine
“Dude was Diagnosed with 4H leukodystrophy almost 3 years ago now. At first we were frightened for his life, now after meeting more families we are learning to live with the changes that are happening to Dude. We overcome the boundaries and battles together. But the one thing that always sticks is Leukodystrophy is the biggest Thief I have ever come across. The cruellest kind, slowly stealing our boy from us. Live life for today xx “
Elliott is affected by adrenoleukodystrophy (ALD). He shares about his experience being diagnosed and living with the condition.
Leukodystrophy is more HARD than you can imagine
“I chose the word ‘Hard’ because when I was diagnosed with a rare disease, I struggled with knowing who to turn to for support, I also struggled with how to find people who understood my rare disease. To this day, it is incredibly hard to explain it to people I don’t know.”
Matthew is affected by adrenomyeloneuropathy (AMN). Below, he shares his experience how he copes with his condition.
Leukodystrophy is more CHALLENGING than you can imagine.
“Speaking from experience of having AMN, it affects all areas of your life. It requires you to bend and adapt in order to overcome things that would otherwise be obstacles. Persistence. Empathy. A dash of stubbornness – and perhaps most of all: humility. Practicing these tenets has allowed me to keep pushing back against it. It is not a life sentence.”
Our Trusts and Grants Fundraiser, Ingrid, shares her word for our campaign.
Leukodystrophy is more COMPLICATED than you can imagine.
“There are over 100 identified leukodystrophies, with some so rare they are yet to be named. Symptoms can vary widely, even among people with the same type making diagnosis and treatment difficult. “
Jenny’s son is affected by H-ABC leukodystrophy. Below she shares her experience of the impact of the condition on a loved one 
Leukodystrophy is more LIFECHANGING than you can imagine.
“Leukodystrophy often starts with small changes, which at first may seem insignificant. However, as they progress and develop, often at an unpredictable pace, they have a catastrophic impact on many aspects of your life.”
Our Retail Area Manager, Natasha, has been with the charity since 2011. She has met many of our families when volunteering at our Community Weekends. Below she shares her word for our campaign.
Leukodystrophy is more CRUEL than you can imagine
“Not enough information from medical professionals. Adults and children are misdiagnosed. Families have no support unless they know about Alex TLC. Families watching their loved ones deteriorate and there is nothing they can do.”
Karen’s son, Cameron, is affected by adrenoleukodystrophy (ALD). Sadly, Cameron’s twin brother, Alexander, passed away from the condition at age 8.
Leukodystrophy is more DEVASTATING than you can imagine
“When you receive a diagnosis of leukodystrophy, you are absolutely devastated, you will probably not have heard of leukodystrophy and what it is. The devastation continues as you watch your loved one deteriorate this may be quickly or over a long period of time and you don’t know what will happen next.
It’s also devastating as the future suddenly looks very different and you feel like everything you thought you knew has changed. “
Our Engagement and Communications Manager, Suzanne, joined Alex TLC at the start of 2021. She works as part of our Support Services team within the charity. Below she shares her word for our campaign.
Leukodystrophy is more INCREDIBLE than you can imagine
“The individuals and families we support are incredible. From diagnosis to living with the condition, they face many challenges along their journeys. They provide support to each other within the community; the only people who truly understand the difficulties they experience each day. I feel privileged to be part of the Alex TLC community.”
Cherie is affected by adrenomyeloneuropathy (AMN). Below, she shares her experience living with the condition.
Leukodystrophy is more CHALLENGING than you can imagine.
“I chose the word challenging because:- Walking is challenging Going out is challenging The pain is challenging Everyday tasks are challenging Explaining how I am feeling is challenging There is so much with this disease that is challenging.”
Our Accounts Manager, Maria, has been with the charity since 2010. She has met many of our families when volunteering at our Community Weekends. Below she shares her word for our campaign.
Leukodystrophy is more SHOCKING than you can imagine
“I think it is shocking when someone finds out that a loved one has the disease, knowing that the person will never have a normal life, will forever depend on someone else, it must be so difficult and sad.”
Clare shares the true impact of leukodystrophy, not only on the affected person, but their loved ones too.
Leukodystrophy is more HEARTBREAKING than you can imagine
“Leukodystrophy doesn’t just affect the person but the whole family”
Chloe’s son, Arlo, is affected by leukodystrophy. She shares her family’s experience of living with the condition each day.
Leukodystrophy is more STRESSFUL than you can imagine
“Our special boy Arlo is part of the small community fighting leukodystrophy. For every 100,000 births world wide only 2 babies will have leukodystrophy! The worst part for us is the waiting for answers we are living in this strange bubble right now stressing over the unknown what our future will be or what symptoms may appear, living each day to the fullest we can trying to make the best memories for Arlo then bedtime the dread hits, the fear and stress of the next day potentially being “the day” we get the news, a new symptom or a phone call with a name of what is stealing our baby boy from us! This disease causes a different level of anxiety and worry to parents and family members, I can’t even describe this feeling we have everyday it’s awful being in the unknown and not having any idea when we will get answers, it could be today, 2 months time or next year we just don’t know how long this will take for our test results to show something! Leukodystrophy has lit a fire in our bellies to live each day spreading awareness of this awful, heartbreaking and soul destroying disease that we are living with! Arlo has taught us to be brave even on the hardest days, to laugh in the serious moments and to love to the fullest! Our special boy, Arlo Paton you are so loved beyond words. Arlos army is fighting with you every step of the way 💙💙💙”
Candice shares her word for our Rare Disease Day campaign
Leukodystrophy is more HEARTBREAKING than you can imagine
“Winnie is our daughter who was diagnosed with Alexander disease a few days before she passed away.”
