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

Nicole- Single Gene Mutation

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While pregnant, Nicole receive a pretty grim diagnosis for her unborn son, Jacob. Doctors found a cyst on his brain, and other abnormal development. Nicole did not think she would be able to carry Jacob to term, but through a second and third opinion, they were given more positive news and gained more hope. Jacob spent the majority of his first year in the hospital, and was diagnosed with Tracheomalacia, an abnormal brain stem, and a single gene mutation- that no one else in the world has been diagnosed with.

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Amanda: Pfeiffer syndrome

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During a prenatal ultrasound, Amanda’s doctors discovered that her daughter, Emmy had some complications. Emmy’s skull had begun to fuse together- a condition known as Craniostenosis. Shortly after Emmy was born, she was diagnosed with Pfeiffer syndrome. Emmy is now 5 months old, and brings so much joy to her family. Even though sweet Emmy may not look typical, she has had no neurological complications- she is right on par with typical babies her age.

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Ann: Twins with Spastic Quadriplegic Cerebral Palsy

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About 8 hours after her twin daughters, Kay and Karen and were born, they were moved to the NICU because a nurse noticed some seizure activity. Shortly after, both girls were diagnosed with Spastic Quadriplegic Cerebral Palsy. After caring for her daughters for 41 years, Ann opens up about the joys and challenges she has experienced raising her daughters.

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Nikki and Alan: Down syndrome

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Nikki and Alan were shocked when their newborn son Wil received a Down syndrome diagnosis. While Nikki immediately felt peace, Alan felt his entire world was crumbling. It took Alan over a month of grieving before he was able to move forward.

They now raise money for worldwide special needs adoption, and continued education for people with disabilities by selling “Wil can fly” calendars. You can find out more by visiting wilcanfly.com

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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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Ryann and Chuck: Spina Bifida Myelomeningocele + Hydrocephalus

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Jaden was born with Spina Bifida Myelomeningocele and Hydrocephalus. He went straight from the hospital and into the Foster Care system. Ryann had just signed up to be a Foster mom, and agreed to take Jaden in. When Jaden when he was 17 months old, Ryann officially adopted Jaden.

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Spina Bifida Myelomeningocele and Hydrocephalus. He went straight from the hospital and into the Foster Care system. Ryann had just signed up to be a Foster mom, and agreed to take Jaden in. When Jaden when he was 17 months old, Ryann officially adopted Jaden.">

Posted November 2017 under Adoption, Hydrocephalus, Spina Bifida.

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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