Stories

Advice and guidance from medical professionals and internet searches can only go so far, and the information and images are often scary. The best source of information, to know what it’s really like to have a child with a disability or life-long condition, is from another parent who has a similar child. We are honored and inspired by the parents who have shared their story with us. They inform and encourage others, in similar circumstances, just starting their journey.

We are actively collecting and updating new stories.

We welcome you to check back often, and to share your story. If you or someone you know has a story to share, please contact us to add your story.

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Most Recent Stories

Courtney and John: Autism and Mood Disorder

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Courtney and John noticed their daughter Bella didn’t interact well with other children. She didn’t speak until she was three, so they thought her behavior problems such as biting, scratching, and hitting were because she was having a hard time communicating. Bella received some assistance in her early years, but at 9 years old a series of events led Courtney and John to check Bella into a psychiatric ward. Her stay there was life changing for all three of them. Bella received an Autism and mood disorder diagnosis. From there there were able to get the proper treatment, direction and a plan of action.

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Katie: Congenital Nephrotic Syndrome and Undiagnosed Seizure Disorder

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At 8 weeks old Katie and Eric’s daughter Emerson developed a fever, so they took her to the emergency room. Once at the E.R., they were told there was something critically wrong with Emmerson and they admitted her. After a week of testing, Emmerson was diagnosed with Congenital Nephrotic Syndrome– end stage renal disease-which is a rare genetic issue. Emerson receives 24 hour care, and does dialysis everyday. Once Emerson is big enough, she will go through a series of testing in hopes of getting a kidney transplant.

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Lacey: Syntelencephaly and partial Agenesis of Corpus Callosum

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Lacey was pregnant with twins when she was told twin A wasn’t developing typically. Doctors saw abnormal brain development, but didn’t have a definitive diagnosis. Shortly after birth twin A, who they named Tell, was diagnosed with partial Agenesis of Corpus Callosum and a rare condition called Syntelencephaly.

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Jennifer- Sibling: Down syndrome

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Jennifer has a little sister that has Down syndrome. She also got a darling son with Down syndrome, when she married her husband. Jennifer talks about how her sister shaped her life, influencing what Jennifer studied in school and who she eventually married.

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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 sensativity 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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Summer: Anencephaly

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Summer found out that Ares had Anencephaly during an early ultrasound and learned that if he made it to term and was born would only live a few hours at best. Rather than aborting Ares, Summer wanted to meet and hold him and if possible have Ares be an organ donor so other babies could benefit from his life. Ares lived a handful of hours and passed away. Summer she sees the positive outcome on herself and her family.

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Courtney: Harlequin Ichthyosis

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Courtney had a typical, uneventful pregnancy. But, immediately after she gave birth to her daughter,   Brenna, there was a shocked silence in the hospital room. Shortly after, Brenna was diagnosed with Harlequin Ichthyosis, which is the rarest most severe form of Ichthyosis. In the beginning, Courtney and her husband were fearful for Brenna’s future; but Brenna’s determination and confidence has shown her parents that nothing will hold her back. Brenna is now 5 years old, and her parents feel privileged and honored to be her parents.

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