Barth Syndrome

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8y

To My Husband, the Father of Our Child With Barth Syndrome

Almost eight years ago, I had no idea what we were about to get into with our son Christopher’s journey with Barth syndrome. Both my husband and I had our own dreams and anticipations for our son we were about to receive in our arms. When Christopher arrived, those dreams were shattered, and the usual [...]

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8y

To the Impatient Woman Standing Behind My Child With Special Needs and Me

I used to be like you. I used to be impatient. I used to be in a hurry. But the little boy I was in line for changed all of that for me. When you impatiently moved into our personal space to let your hurried presence be felt, please know we sure felt it. When you [...]