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CastilloFamily

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1 reviews

Review for Trisomy 18 Foundation, Woodbridge, VA, USA

Rating: 2 stars  

I had a negative experience with this organization. With early medical intervention and therapies, many more children with T18 are living longer, healthier lives than in previous years, and a T18 diagnosis isn't as hopeless as it used to be. Unfortunately, most of the parents whose children are thriving are kicked out of the Trisomy Foundation groups, as I was. After I was removed, I emailed the founder with my concerns. She scheduled a phone meeting with me, then cancelled. I appreciate the support the Foundation offers to grieving parents, but my issue with this organization is that it pays to dominate the search engines, and continues to portray T18 in a hopeless light.

Role:  Client Served

When parents participate in the Foundation's online groups with motives not to answer the question asked by a fellow parent with their own experience but instead to share what they think God wants this parent to do and refer them to other groups in surreptitiously it can come across as hurtful and even shaming to those who don't share their same religious beliefs. Trisomy 18 diagnoses affect parents of all faiths and no faiths. We ALL love our dreamed-for child regardless of the medical decisions we must face making on behalf of our child. We ask group members avoid comments that "should, shame, stigmatize or suggest shunning" other parents in the midst of the most difficult, heartbreaking medical decisions of their lives and those posters ignore our requests after repeated warnings, we are left no option but to remove them from the group. In addition, to correct the poster's claim -- T18F has never and will never use Google paid advertising for search engine ranking.