Keanu’s Clubfoot

Stacey Smiler explains what clubfoot (talipes) is. She describes her reaction to finding out her son's diagnosis and Keanu's subsequent treatment.

July 20 2020

Sport for Confidence – socially distanced.

Occupational Therapist, Sophie Garratt, talks about Sport for Confidence. Sport for Confidence is an award winning Community Interest Company delivering sport for all. They had to quickly adapt from their work in leisure centres to support their clients at home.

July 2 2020

Keanu’s Story – a story of Juvenile Epilepsy.

Stacey Smiley talks about her son, Keanu's, journey with epilepsy from the age of 1 to now, 5 years later. She talks about his diagnosis, what impact it had on Keanu and about discovering the epilepsy was caused by a CHD2 gene mutation. Stacey also gives some useful tips on how to interract with people with hidden disabilities.

May 17 2020

Supercharged Superhero

A story about Myalgic Encephalomyelitis and hidden illness. Gemma Everson talks about her husband’s diagnosis of Myalgic Encephalomyelitis; how it impacted on her family and led her to write a children’s book. Our story began in July 2017. We had just welcomed our second daughter, Gracie, into our family and life was seemingly perfect. I …

Continue reading "Supercharged Superhero"

April 9 2020

Mitrofanoff – what??

By Aimee King I have just had yet another exhausting conversation with a medical professional who knows nothing about my mitrofanoff, telling me all about it. Now I understand that not many health care workers will know about my condition, but why not? something like a simple UTI which, trust me, I know a lot …

Continue reading "Mitrofanoff – what??"

March 17 2020

Rodney, the hare that didn’t care (but he did really)

Gail Crampton talks about her book, Rodney the hare that didn’t care (but he did really). She explains why she wrote it to help children with hidden illnesses and medical conditions, and how important it is. It started with Crohns Rodney Meadow-Hopper, The Hare Who Didn’t Care (but he did really), was released at the …

Continue reading "Rodney, the hare that didn’t care (but he did really)"

March 4 2020

Moles Can’t Play Hide and Seek

Astrid Middleton describes her journey with the genetic eye condition retinitis pigmentosa. She also describes her and her son's attitudes to their neurodiversity and how they own it. This is what prompted her to write children's stories about being included and she shares one with us here.

March 2 2020

Crohn’s Disease, diagnosing my daughter.

by Gail Crampton Gail Crampton talks about the journey to diagnose her daughter with Crohn’s disease and why it has led her to campaign and write a book to help others. Crohn’s – it started with stomach pains When my daughter, Isabelle, was 6 she began having severe stomach pains, nausea and no appetite. It …

Continue reading "Crohn’s Disease, diagnosing my daughter."

February 16 2020

Tube feeding, my experience by Sam

14 year old Sam shares his experience of tube feeding and how it has impacted on his life. Tube feeding – first an NG tube I was 7 yrs old when I had my first feeding tube, this was because my body couldn’t absorb all of the essential nutrients that I needed in my diet, …

Continue reading "Tube feeding, my experience by Sam"

February 12 2020

Diagnosing Ehlers-Danlos Syndrome

Hi, my name is Caroline Bailey and I have Ehlers-Danlos Syndrome, a rare and difficult disease to spot . I and 48 years old and have been married for 25 years. My 3 children are Samuel age 24, Robyn age 20 and Darcey age 15. I also have a stepdaughter age 37 and 2 step …

Continue reading "Diagnosing Ehlers-Danlos Syndrome"

February 6 2020