Mother distraught as website containing blog posts about chronically ill daughter shut down

Cherished memories disappeared without a trace

Sabrina Barr@fabsab5
Monday 22 January 2018 12:22
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A mother was left devastated when treasured photos and blog posts about her chronically ill daughter disappeared online.

Virginia Sole-Smith is a 36-year-old health journalist and mother-of-two from New York.

When her eldest daughter Violet was diagnosed with a congenital heart defect at only one month old, Sole-Smith needed an outlet to express her feelings and keep family and friends up-to-date with news about Violet’s health.

She began writing blog posts on CarePages, a website dedicated to people who want to document the journey of a loved one with a chronical illness.

The website affords families an element of privacy, as people have to register with the online community before being given access to any posts.

Sole-Smith found writing about her daughter very therapeutic.

“As a writer, I needed a way to be processing this through writing; we need to keep talking and thinking and processing,” she told Cafe Mom.

However, as membership of the site declined and competition increased, CarePages shut down on December 31 last year, taking with it years of cherished memories.

In October, CarePages sent out an email informing their members that the site would soon no longer be in use.

Sole-Smith missed the email as she was nearing the end of her second pregnancy, only realising mid-January that she could no longer access the posts that she’d written about her daughter.

“It felt like a new trauma on top of the old trauma,” she said. “To think, ‘This was our record, this was the thing that meant so much to us during this horrible time in our life.’”

Other parents have also shared their heartbreak at the news.

Angela Grier used to write about her 7-year-old son Nate’s plight with brain cancer, who sadly passed away.

“... It’s like losing a part of him all over again,” she told NBC 5.

Thankfully, Sole-Smith was able to salvage the posts that she thought she’d lost forever.

“This morning I thought I had lost every blog post I’d ever written about our daughter’s medical journey,” she wrote on Instagram.

“By this afternoon, I recovered it all (a 727 page PDF!).”

Sole-Smith is encouraging other former CarePages members to contact the site’s support team and has revealed that her daughter is now in a stable condition.

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