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Making Way–Support for rare and special kids.

An Ordinary Day: Kids with Rare Genetic Conditions

Photographer Highlights Kids With Rare Genetic Conditions, Including Mowat-Wilson Syndrome, In Stunning Photos 

AnOrdinaryDay-book-JonathanAn Ordinary Day is a documentation of the personal lives of courageous kids who have rare genetic conditions and their families who love and support them at all cost. 1 in 10 Americans are living with a rare genetic condition. The conditions that rule the lives of these families are often overlooked by society, but for millions of people it is a matter of foremost priority. This book sheds an important and compassionate light on these existences.

We are honored to have Jonathan, who has Mowat-Wilson Syndrome, featured in the book.

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Hardcover: 176 pages
Publisher: powerHouse Books (October 17, 2017)
Language: English

Georgia Couple Finds Out About Mowat-Wilson Syndrome Online

Fox5 News
February 2017

Movie “The Key of G” now available on Vimeo

The Key of G is now available streaming online! If you know anyone who should see this film please share.

thekeyofgTHE KEY OF G is an award-winning feature documentary about disability, caregiving and interdependence. The film follows Gannet, a charismatic 22-year-old with physical and developmental disabilities, as he leaves his mother’s home to share an apartment with a close-knit group of artists and musicians who support him, not only as paid caregivers, but also as friends. Together they create a uniquely successful model of supported living, and a compelling alternative to institutionalized care.

Genres: Documentary
Duration: 59 minutes
Subtitles: English
Availability: Worldwide


Make A Wish Making Waves for Local Boy With Rare Genetic Disease

By TWC News Web Staff
Sunday, September 18, 2016 at 12:21 PM EDT


ROCHESTER, N.Y. — The Make A Wish foundation is making waves for a child suffering from a rare genetic disease.

Chase Fekete always dreamed of swimming in his very own pool.

On Saturday his parents, with the help of Marquis Spas and Make A Wish, that became a reality.

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Bella the Ballerina

By A Sharmed Life!
January 1, 2016 

Meet Bella. She is a 12-year-old girl who loves to dance and listen to music. For the second year in a row, Bella danced in the December 11th adapted performance of the New England Ballet Company and the Milford Connecticut Recreation Department’s Nutcracker Suite.

Bella and her smiley personality had two parts in the production. She shone as the Dew Drop princess and she was a snowflake in the production’s finale.

A dream of many young girls, dancing in the Nutcracker might not have seemed within reach for Bella, a young girl with Mowat-Wilson Syndrome. Bella, like other children with this syndrome, has significant developmental delays that result in cognitive and physical challenges. Without many spoken words, Bella understands much of what is said to her. This means that Bella comprehends more than people realize, so not being able to express her wants and needs can be frustrating.

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