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Finding Our Tribe

Reposted from The Choice Life About The Campbell Family We are the Campbells 3 of our 5 kids suffer from a rare genetic neurological terminal illness called MLD.LIKE & Follow May, Tori & Ike as they fight MLD. Emma was aghast when we entered the conference. She hadn’t realized that there were so many other families who were struggling with MLD. Feeling isolated and that no one really understands your situation is one of the unfortunate consequences of living with an extremely rare disease. We schlepped the whole family out to Philly for this very reason. We wanted to connect to other families that knew what we know. People who have been tr

One day there will be no patients to treat

Even with an estimated 60 forms of the disease and more types of leukodystrophy being identified by the researcher Dr. Adeline Vanderverver, leukodystrophies are rare. The authors of one paper speculate that the incidence of leukodystrophy worldwide is about 1 in 5000 people, the same odds as giving birth to triplets (without the aid of fertility treatments). The thing is, we might be a rare disease, but the label of orphan disease most assuredly does not fit leukodystrophy anymore. Orphans are alone and neglected, that is not the case with leukodystrophy. From the efforts of courageous families using social media to transform the landscape for patient advocacy to the the stunning developm

Mothering Cal

Originially published in Slate on Mother's Day 2013 /header I have three beautiful children, the oldest two, who are 9 and 13 years old, excel at school and run track and play baseball and have friends. Their teachers tell my husband and me these children are kind and empathetic and smart and filled with promise. And yet, even though I have been a mother for more than a decade and I have written an influential book about motherhood and have been called a nationally recognized expert on families in the United States, I didn't know anything about love and sacrifice and children and mothering until last year when the doctors at the finest children's hospital on the planet told me that my youn

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