Winter appeal for disability awareness from children's charity

As part of their Winter Appeal, Jessie May, the South West's children's hospice at home is urging the public to acknowledge the battles families face when a child has a hidden disability.

Hidden disabilities, like those faced by some children with life-limiting conditions, can be the root of misunderstandings by members of the public, even though their impact on daily life can be profound.

As highlighted by Hidden Disabilities UK, conditions like chronic pain, neurological disorders, and autoimmune diseases significantly affect people's lives even if they aren't immediately visible to others.

This is the reality for Emma and her daughter Izzy, a bright and curious child living with a life-threatening condition. Although Izzy looks like any other child to strangers, the challenges of her condition are anything but ordinary. Izzy can do most of what her friends can do, and she loves being in school shows, reading books, writing stories and playing with her girlfriends. However, because she doesn't outwardly show signs of her condition, Emma and her husband Neil often face scepticism when they park in disabled spaces, from members of the public unaware of Izzy’s struggles.

Emma said: “People assume everything is fine because Izzy doesn’t ‘look sick,’ but they don’t see the sleepless nights, medical equipment, or constant worry. 

“Yes, this is fine, it’s wonderful in many ways that no one knows Izzy was so sick when she was little, and even now, while she is stable, they have no idea about the extra care. But that also makes it exhausting as people wonder why you feel so anxious and worried much of the time!”

This scenario ties into broader issues discussed by disability advocacy groups, such as The Disability Rights Commission (UK), which address the misuse of blue badges and, alongside this, the challenges by members of the public to disabled people who don’t look disabled. The frequent misunderstandings faced by families like Izzy’s highlight the ongoing struggle for recognition of hidden disabilities.

In addition, families facing life-threatening conditions, like Izzy’s, often endure emotional strain and isolation, highlighting the urgent need for greater support and awareness. Charities such as Jessie May, the South West’s children’s hospice at home, play a vital role by providing expert medical care, emotional support, and respite, allowing families to focus on spending quality time together despite the challenges.

“Jessie May has made such a difference for us,” Emma says. “Their support allows us to feel more like a family and less like we’re just managing a condition.”

Jessie May nurse Steve said: “Life-limiting conditions are not always visible, but the challenges are very real. I have seen Izzy grow up and witnessed both her resilience and the immense effort her family puts into her care. Behind her smiles and laughter, there’s a level of vigilance and dedication that many wouldn’t realise.”

This year, Jessie May is urging the public to acknowledge the hidden battles families like Emma’s face and to contribute to making their journey a little easier. At a time for giving, small acts of kindness can make a big difference, bringing comfort and connection to families facing hidden disabilities, whether through donations, volunteering, or raising awareness.

To help support families like Emma and Izzy’s, please visit: Winter Appeal - Jessie May.