Episode 12: Ali and Angela – living with FOP

Episode 12 Transcript 

There’s a certain belief in the special needs world that it’s wrong to want to change your child. While I agree that accepting your child’s condition is an important step, I don’t agree that every special needs parent should be happy with that diagnosis.

Ali and Gabe the day they found out about the diagnosis.

Ali and Gabe the day they found out about the diagnosis.

This next episode features a story where I don’t think any person could argue that Angela McKean is well within her rights to want to take away her daughter’s diagnosis from her.

Angela and Gabe McKean’s daughter Ali has Fibrodysplasia Ossificans Progressiva, or FOP, which is slowly turning her muscles and ligaments and tendons to bone. She is being trapped inside her body and the process is painful and makes day to day life difficult.

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Despite this diagnoses, Angela and Gabe, and their four children, Lexus 19, Michael 18, Kaiden 11 and Ali 9 1/2, are brimming with positivity and love. They are a true example of what you can achieve when you pull together as a family.

This episode tells the story of how Angela and Gabe struggled to find a diagnosis for Ali and how they have coped since then. You can read more about Ali and Angela on Angela’s blog Ali’s Army.

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This episode is brought to you by Wonderbaby.org. Wonderbaby is a resource, supported by Perkins school of the blind and is dedicated to helping parents of young children with visual impairments as well as children with multiple disabilities. At Wonderbaby you’ll find a database of articles written by parents who want to share with others what they’ve learned about playing with and teaching a blind child, as well as links to meaningful resources and ways to connect with other families. Thank you Wonderbaby for coming on board!

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