Real stories from families

Behind every DEE-SWAS diagnosis is a child, a family and a life that has changed.

This section features real stories about children and families living with DEE-SWAS and related conditions. Families have generously shared their experiences in their own words. Stories have been lightly edited highlight themes that help others understand the social, emotional and physical impacts.

To protect privacy, stories are de-identified. Images are AI-generated illustrations based on descriptions of the child and do not depict the child directly, while key details such as age, gender and country remain true.

Stories can be explored by theme, including Education, Community, Family, Emotions and Identity. This section also includes media articles published about young people impacted by DEE-SWAS.

If you would like to contribute a story, please visit the Get Involved page.

Melanie Ridout 5/12/24 Melanie Ridout 5/12/24

Epilepsy fails NDIS funding criteria because it's not considered a disability, and these families are suffering

Adeline Hanna is a playful little girl with a cheerful sense of humour.

Her mother, Jessamy Eccles describes her as "creative" and says she likes to pretend she owns a coffee shop and serves drinks to people.

But at almost seven years old, Adeline is intellectually delayed for her age.

"Adeline is very impulsive, it's like being with a toddler," Ms Eccles said.

Melanie Ridout 4/5/24 Melanie Ridout 4/5/24

Dublin LGFA’s Niamh Crowley suffered from a rare condition as a child

The talented football player opened up about her life away from the sport, including how she suffered from a rare condition Landau Kleffner syndrome when she was younger.

Melanie Ridout 18/1/24 Melanie Ridout 18/1/24

Mother struggles to care for son with rare condition

Olivia Mupwedi (40) from Ongwediva has been facing the immense challenge of caring for her son, By-Faith Lwiishi (8), who was diagnosed with Landau-Kleffner syndrome two years ago.

Lwiishi, once a normal and active child, now suffers from a disorder of the nervous system, making him unable to walk, talk, eat or perform any other activities.