Child Loss

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Most Recent Stories

Valorie: Cockayne syndrome

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Valorie’s son Jace was a typical infant. Around 12 months, his head measurements were falling behind, and he was diagnosed with Microcephaly. He also had a severe sensitivity to the sun. Hearing there was a correlation with the two, Valorie sent a skin biopsy to a specialist in England who was able to confirm that Jace had Cockayne syndrome. Valorie had to push doctors and insurance companies to get the procedures and care that Jace needed. Valorie learned to become a fierce advocate for Jace.

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Microcephaly. He also had a severe sensitivity to the sun. Hearing there was a correlation with the two, Valorie sent a skin biopsy to a specialist in England who was able to confirm that Jace had Cockayne syndrome. Valorie had to push doctors and insurance companies to get the procedures and care that Jace needed. Valorie learned to become a fierce advocate for Jace.">

Posted October 2017 under Child Loss, Cockayne syndrome, Microcephaly, Mirocephaly, Rare diagnosis.

Caitlin and Dallin: Spinal Muscular Atrophy, or SMA, Type 1

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Caitlin and Dallin’s daughter, Auni, was 4 months old when they realized she wasn’t developing typically. When Auni was 7 months old, she was diagnosed with Type 1 Spinal Muscular Atrophy, or SMA, which is a terminal diagnosis. Auni lived 22 months before she passed away. Caitlin and Dallin open up about the emotional journey they have been on, and the gift Auni was to them, and the joy she brought to their lives.

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Spinal Muscular Atrophy, or SMA, which is a terminal diagnosis. Auni lived 22 months before she passed away. Caitlin and Dallin open up about the emotional journey they have been on, and the gift Auni was to them, and the joy she brought to their lives.">

Posted August 2017 under Child Diagnosis, Child Loss, Spinal Muscular Atrophy.

Jennifer and James: Adoption of Four Special Needs Children.

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Jennifer and James have 10 children, four are biological and six were internationally adopted. Four of their children have special needs including Down syndrome, Autism, Reye’s syndrome, and Moyamoya disease.  Jennifer and James have a truly inspiring story and so much love in their family.

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Phyllis and Keven: Polymicrogyria

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Phyllis and Keven’s youngest daughter, Laura, was not progressing as a typical  three or four month old, so they took her to a specialist and found out Laura  had Polymicrogyria. Phyllis and Kevin were crushed to learn the news. Laura could not walk, talk, or feed herself, but she could light the room with her infectious smile.

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Phyllis and Keven’s youngest daughter, Laura, was not progressing as a typical  three or four month old, so they took her to a specialist and found out Laura  had Polymicrogyria. Phyllis and Kevin were crushed to learn the news. Laura could not walk, talk, or feed herself, but she could light the room with her infectious smile.

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Posted March 2017 under Child Loss, Infant Diagnosis, Non-Verbal, Polymicrogyra.