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

Kayla and Josh: ADNP syndrome

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Kayla and Josh started realizing that their son Parker was falling behind in his development. They went to a geneticist, and through genetic testing Parker was diagnosed with ADNP syndrome- a genetic mutation which can include developmental delays, Autism, and distinct facial features. At the time, he was the 85th person to have been diagnosed in the world. Kayla and Josh open up about the joys and sorrows they have experienced raising Parker, and how they feel blessed they were chosen to raise him.

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Laura and Devin: Sibling and Guardian- Down Syndrome

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When Laura’s mom passed away, Laura and her husband Devin took on the role of caring for Laura’s sister Annie who has Down syndrome. They have now cared for Annie for 7 years, and they talk about the impact Annie has made on them and their children.

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Mercedes and Andy: Down syndrome Adoption

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After a heart breaking year, Mercedes and Andy went on a mission trip to Haiti and served at an orphanage with special needs children. Shortly after, they decided to adopt a child with Down syndrome. 6 months later their beautiful daughter Sunflower was places in their arms.

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Connie: Cerebral Palsy, Cognitive Impairment and Seizure Disorder

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Connie tell us what is was like raising her daughter, Farah, who has Cerebral Palsy, a cognitive impairment, and a seizure disorder. who is total care- meaning someone needs to feed, bathe, and clothe her. She open up about the joys and challenges she faced raising a special needs daughter. Connie was told for the first 5 years of Farah’s life to place her in an institution, but Connie refused. Farah is now 41 years old, and has remained at home with her family all of her life.

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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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