Fragile but Fierce – a Column by Patrice Williams

Last in a series. Read part one. I continued an interview this week with my son Jonah, who is 11 and was born with junctional epidermolysis bullosa (EB), after ... Read more

September 17, 2020September 16, 2020

Interview With the Butterfly, Part 1

Columns, Fragile but Fierce – a Column by Patrice Williams

First in a series. My son Jonah was born with junctional epidermolysis bullosa in 2009. He is now 11 and in the sixth grade. I am honored to write this ... Read more

September 3, 2020September 15, 2020

Focusing on the Manna for Today

Columns, Fragile but Fierce – a Column by Patrice Williams

Our son Jonah is 11 years old now and just began the sixth grade. It blows my mind to think that it has been 11 years since our journey ... Read more

August 20, 2020August 19, 2020

If You Are Struggling, Find Your Army

Columns, Fragile but Fierce – a Column by Patrice Williams

When my son Jonah was born with epidermolysis bullosa, saying it was a shock is a gross understatement. Unknowingly, my husband, Matt, and I each carried mutated genes that, ... Read more

August 6, 2020August 3, 2020

Choosing Between Bad and Worse, I Learned to Become an Advocate

Columns, Fragile but Fierce – a Column by Patrice Williams

The scariest thing about a rare disease is that nobody has the answers you’re desperately seeking. When you are facing something so unfamiliar and the people who are supposed ... Read more

July 23, 2020August 19, 2020

My Butterfly Baby

Columns, Fragile but Fierce – a Column by Patrice Williams

In most cases I don’t agree that “ignorance is bliss.” In general, the more information we have, the better people we are and the wiser our choices. But there ... Read more

Fragile but Fierce – a Column by Patrice Williams

Interview With the Butterfly, Part 2

Interview With the Butterfly, Part 1

Focusing on the Manna for Today

If You Are Struggling, Find Your Army

Choosing Between Bad and Worse, I Learned to Become an Advocate

My Butterfly Baby

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