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

Katherine and Jeff: Ellis-van Creveld syndrome

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While pregnant, Katherine’s baby Arabella was diagnosed, and then re-diagnosed with several conditions that were all fatal forms of Dwarfism, including Thanatophoric Dysplasia, Short Rib Polydactyly syndrome,  and a major heart defect.

She and her husband Jeff were told to either terminate the pregnancy, or plan a funeral. They chose to continue the pregnancy. Arabella is now a beautiful 2 year old. She was officially diagnosed with Ellis-van Creveld syndrome, a sub-type of Short Rib Polydactyly syndrome. This syndrome has a 30-50 percent survival rate.

Katherine is now expecting her third child, Shiloh. Shiloh has also been diagnosed EVC, as well as a major heart defect. They do not know if Shiloh  will live, but are grateful for everyday they have with her.

 

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Deborah and Kent: Traumatic Brain Injury

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Deborah and Kent’s two year old daughter drowned, and was miraculously brought back to life; As a result, Heather lived the rest of her life with a traumatic brain injury.

Deborah and Kent open up about the day she drowned, and the difficult journey they faced accepting their new life; and how they learned to let go of the daughter they once had.

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Rebekah and Chris: Achondroplasia

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Rebekah and Chris have Achondroplasia, a form of Dwarfism.

They have 2 children, one that has Dwarfism, and one that does not.

Rebekah and Chris open up about what it’s like living as a little person, and how they feel now that they have a daughter with the same condition.

Rebekah is a great resource to parents who receive a Dwarfism diagnosis for their child. You can read a letter she has written to these parents here.

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A Snapshot Story- Jessica: Down syndrome

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When the  doctor called Jessica  with test results that showed her unborn son would have Down syndrome, she immediately felt a sense of fear and anger she had never experienced before. Negative thoughts flooded her brain for days and weeks. She felt resentment and anger towards her pregnancy.

When she told her closest friends and family the news; their reactions were overwhelmingly positive and supportive. They showered her with love and told her how amazing he was going to be. And they were so right.

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A Snapshot Story- Dawn: Born Typical; A Misdiagnosis Of “Incompatible With Life”-

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Dawn saw several specialists during her pregnancy, who all gave her baby a grim diagnosis. She was told he had Trisomy 13- Patau syndrome, which was described to her as a condition that is incompatible with life. She was told her son would not live past birth. She was recommend by physicians, family, and friends to terminate her pregnancy. She and her husband decided not terminate, and their son was born as a typical baby- with no complications, or conditions.

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Mandy and Steven: Hyrops Fetalis, and Bilateral Renal Agenesis

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Mandy and Steven had four girls and were excited at the possibility of their fifth child being a boy. At 20 weeks, Mandy and her oldest daughter went to her doctor’s appointment and were told that something was seriously wrong with her baby.  Mandy and Steven were told that the baby had a condition called Hydrops Fetalis. The doctors also had trouble finding some vital organs and noticed his heart was enlarged; they offered the option to terminate the baby. After many tests were done, they found out that the baby had Bilateral Renal Agenesis

 

 

 

 

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