Each year we are proud to take part in Erb’s Palsy Awareness Week and support the Erb’s Palsy Group with their mission to raise awareness and understanding around Erb’s Palsy.
Following our previous themes, such as ‘I Inspire Me‘, ‘#ThisIsMe‘ and ‘Erb’s Palsy Heroes‘, we are continuing to shine a light on body positivity this year with our theme ‘Invisible Struggle, Visible Strength‘.
Through our long-term connections with The Erb’s Palsy Group, we wanted to highlight some of the EPG members and their powerful journeys.
Here we shine the spotlight on 4 individuals, each with their own unique stories.
Matthew’s Journey
Behind every diagnosis of Erb’s Palsy is a story of quiet resilience, fierce advocacy, and unwavering love. Diane, mum to Matthew, shares a powerful testament to the invisible struggles and visible strength that define so many families’ journeys.
Matthew was born with left-sided Erb’s Palsy, and thanks to the early intervention of a vigilant paediatric physiotherapist, Diane was guided to seek support from the Erb’s Palsy Group. That moment changed everything. From a referral to Professor Kay in Leeds to four life-changing surgeries, Diane and Matthew navigated a complex path with courage and determination.
Now 20 and studying at university in Cardiff, Matthew continues to face challenges – especially as he adjusts to independent life without daily support. Yet, his strength shines through. A successful legal claim enabled him to purchase an automatic car and make vital adaptations, empowering him to live more freely and confidently.
But the journey is ongoing. Diane is currently advocating for Matthew to be seen again as he is experiencing problems with his shoulder. Her persistence is a reminder that the fight for proper care doesn’t end with childhood—it evolves as our children grow.
Throughout it all, the Erb’s Palsy Group has been a lifeline. From expert guidance to community fundays, the group has offered connection, hope, and a sense of belonging. Diane and Matthew have only missed two fundays in twenty years; a testament to their commitment and the value these events bring.
As we mark Erb’s Palsy Awareness Week, Diane’s story reminds us that the most powerful strength is often the one we don’t see – the quiet perseverance, the daily adaptations, the relentless advocacy. It’s the strength of parents like Diane, and young adults like Matthew, who show us that while the struggle may be invisible, the strength is undeniable.
Hazel’s Story
“Every mother fears the worst when they are approaching childbirth, it’s completely natural. But absolutely nothing can prepare you for a perfectly healthy and normal child being permanently disabled in a way that was completely preventable.”
When Hannah welcomed her daughter Hazel into the world, she never imagined that their journey would include navigating the challenges of a birth injury. Hazel was born with Erb’s Palsy – a condition caused by damage to the brachial plexus nerves during delivery. It was an injury that didn’t need to happen, and yet it changed everything.
The early days were filled with anger, heartbreak, and confusion. Like many parents, Hannah faced not only the emotional toll of the diagnosis but also the well-meaning but often ignorant comments from other who didn’t understand the reality of living with Erb’s Palsy.
But through the invisible struggles came visible strength.
Hazel, now two years old, is beginning to notice that her arm is different. Yet nothing slows her down. Her resilience is remarkable. She explores and plays – just like any other child. Watching her grow, Hannah reflects on how her own fears for Hazel’s future have shifted. “I feel silly for being so full of fear,” she says. “She’s unstoppable.”
This journey had also revealed Hannah’s own strength. The experience of raising a child with Erb’s Palsy has taught her about perseverance, advocacy, and the power of community. “So many families have been affected unnecessarily,” she says, “but we are a strong and powerful community and will continue to raise awareness.”
Max’s Story
Max is a remarkable 10-year-old whose journey reminds us that strength isn’t always loud. Sometimes, it’s found in the quiet moments of perseverance, in the everyday acts of courage that go unseen.
Max’s struggles are often invisible to the outside world. They include the daily commitment to physiotherapy, the emotional toll of unkind words from classmates who don’t understand, and the physical discomfort of wearing a cast after surgery. These are challenges that many don’t see – but they are real, and they are hard.
Yet Max meets each one with a quiet determination that inspires everyone around him. His strength lies in his ability to simply “get on with it.” He doesn’t dwell on what he can’t do – in fact, he’s not even fully aware of his limitations. Instead, he adapts. He finds his own way forward, often without complaint, and always with courage.
Max’s story is a powerful reminder that children with Erb’s Palsy are not defined by their condition. They are defined by their spirit, their resilience, and their ability to rise above the challenges they face. His journey encourages us to look beyond the surface – to see the strength that lives in every child who keeps going, even when it’s hard.
Temi’s Story
For 36 years, Temi lived with Erb’s Palsy without even knowing its name. She became aware of the condition during a conversation with her GP two years ago. Like many, she adapted quietly hiding her condition, pushing through pain, and finding ways to make life work. Her story is a powerful reminder that not all struggles are visible, and that strength often lies in the silent battles we fight every day.
Temi spent the early years of her life adapting or missing out due to fear, often hiding her condition from friends and family. She is unable to lift her affected arm past her chest and overcompensates with the other.
Motherhood brought its own challenges for Temi, she was anxious about dropping her children when lifting, carrying or bathing them and she found breast-feeding extremely difficult.
Her confidence and self-acceptance have grown over time and her Husband has been a constant source of support, reminding her that her arm doesn’t define her beauty or self-worth.
Temi recalls a moment before her brother’s wedding when her husband wasn’t there to help her with her dress. The zip ran down to her lower back and she needed two hands to fasten it but she couldn’t reach with her affected arm. She had to put on a long jacket in the warm weather to cover her exposed back until a family member could assist her. Her 5 year-old son tried to help but he couldn’t quite manage – an experience she now laughs about.
Pilates and supportive instructors have helped Temi embrace her body, build confidence and strengthen her arm. Temi’s journey is filled with moments that many wouldn’t notice – but each one speaks volumes about resilience.
She has the following advice to share with her younger self or anyone diagnosed with Erb’s Palsy:
“Do as much exercise as you can to strengthen your arm. Always try your best and don’t rule yourself out of an activity straight away. Don’t let people make you feel ashamed or embarrassed – the shame should be on them. You are wonderfully and beautifully made, so own it.”
She advocates for greater awareness, especially in medical settings where understanding is often lacking. Her hope is that more people recognize that Erb’s Palsy affects everyone differently—and that even when an arm looks “normal,” the struggle behind it is real.
Thank you to our inspirational individuals for sharing their stories!
During Erb’s Palsy Awareness Week, we celebrate everyone living with Erb’s Palsy. Your stories matter. Your strength is visible. And your voice is raising awareness.
