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

Georgia and Nick: Autism

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When Georgia and Nic’s son Lincoln was a year and a half, he was ahead in his speech, and in lots of different ways, he was a smart kid doing really well. The older he got, he started showing signs of Autism. He lost more and more speech and stopped interacting with his loved ones. He began showing sensory issues, like having a hard time being out in public, which are all signs of being on the spectrum.

“I didn’t really want face that he was showing signs of Autism, but I just didn’t have a choice. When he was two years old, we were at Nick’s family’s house. Lincoln’s first word was ball, and I remember saying, “Come get the ball! Come get the ball!” and he couldn’t say the word ball. That was the moment when I knew something was up and that he had lost so much speech that he couldn’t say that word anymore. That’s when I knew I had to get him checked out, and it was shortly after that when we had him diagnosed.

At first it was just getting to understand that even though I knew my kid, I felt like I didn’t know my kid. After that diagnosis, I didn’t know what to do. For me, the challenge in the beginning was knowing what to do to help him, because I had no idea. We went to early intervention, I absorbed as much material as I could; I got every book I could get, and I had wonderful neighbors who had kids on the spectrum who guided me as to some of the things that I should do. I really just consumed information. I started doing floor time therapy with him two-to-three hours every day. For a kid who doesn’t want to play and interact with you, it’s a little bit tricky. In the beginning, what was so hard was trying to figure out the right therapy. Then this miracle happened, and the state of Utah started a lottery to cover behavioral therapy for kids on the spectrum because they hadn’t covered Autism on insurance before. They decided to do this lottery, and my son was a winner; he won the lottery! We got free therapy after that, and it made a huge difference. He’s really not the same kid. He was low-functioning and had stopped talking almost entirely. He’d say mom and dad, but other than that, he stopped talking and was retreating into his own world. Now, however, most people can’t even tell he’s on the spectrum. The therapy has done so much. He has got his own little quirks, but every child does, and I love him and those quirks about him. In fact, in some ways, I feel like he’s an easier kid than my other children because he’s so predictable. He’s honest and has such a good heart; he’s an amazing kid, and I wouldn’t change him.”

 

 

 

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Stephanie and Andy: Anencephaly

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Newlyweds Stephanie and Andy were elated to find out that Stephanie was pregnant. During an ultrasound, their daughter Grace was diagnosed with Anencephaly- a condition that is incompatible with life. Doctors told them if Grace made it to term, she probably wouldn’t make it through her birth. They told them if she made it through the birth, she would only live a few minutes.

Although Stephanie and Andy were devastated, they made the most of her pregnancy- not knowing how long they had with their daughter. Grace made it to birth- and lived 10 hours and 32 minutes.

Stephanie and Andy have used their experience to help others, and have created the nonprofit organization Carrying To Term. Which offers support, resources, and tools to the medical community, parents, friends, and relatives.

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Carrying To Term. Which offers support, resources, and tools to the medical community, parents, friends, and relatives.">

Posted April 2018 under Anencephaly.

Cora and Trey: Rett syndrome

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When Cora and Trey’s twins were missing some developmental milestones, they asked to be referred to a genetic specialist. Through genetic testing, both girls were diagnosed with Rett syndrome– a very rare chromosomal mutation that effects motor, neurological, and behavioral issues among others. There are only 8 other sets of twins with Rett syndrome in the United States.

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Rett syndrome- a very rare chromosomal mutation that effects motor, neurological, and behavioral issues among others. There are only 8 other sets of twins with Rett syndrome in the United States.">

Posted March 2018 under Rett syndrome.

Sandra: ADNP syndrome

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After Sandra’s twins were born, they noticed one of the twins, Tony, wasn’t developing typically. Through testing, they discovered several brain abnormalities, heart abnormalities, vision, behavioral, feeding, and many more complications. Sandra’s genetic team told her it was unique to Tony- but Sandra thought differently. Tony went undiagnosed until he was six years old- but through some major research and dedication from Sandra, she found a genetic research study, and Tony was subsequently diagnosed with ADNP syndrome.

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Jessica and Johnny: Goldenhar syndrome

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While Jessica was pregnant with her son Griffin, she and her husband Johnny were informed he had a heart complication- Tetralogy of Fallot. It wasn’t until Griffin was born that they realized there were further complications. Griffin has been diagnosed with Goldenhar syndrome. He has scoliosis, facial differences, heart complications, and a limb difference. Griffin is very proud of who he is, he is extremely positive, and advocates for himself.

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Jessie and Nathan: DiGeorge syndrome and other abnormalities

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During a 24 week ultrasound Jessie and Nathan were told that their unborn son, Ammon, had a heart condition as well as clubfoot in both feet. After they met with a specialist, and were encouraged to abort their son. They choose to continue with the pregnancy and Ammon was unexpectedly born with several other conditions. Despite all of this, he has enriched their lives with his happy personality.

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Genie: ADNP syndrome

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Genie had extensive genetic testing while pregnant with her son Rowland. The tests showed nothing abnormal. Very shortly after birth, Genie and other specialist noticed some abnormalities. It wasn’t until Rowland was 4 years old that he received a diagnosis- ADNP syndrome.

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Gina- Down syndrome and Spinal Muscular Atrophy

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Immediately after Gina’s daughter Larkin was born, Gina could tell she had Down syndrome. When Larkin was 10 weeks old, she was diagnosed with Spinal Muscular Atrophy Type 1, which is the most severe type. Gina says one of the hardest things is not being able to give her other children as much attention. Larkin is now 12 years old, and is the only known person to have lived with both Down syndrome and SMA.

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Kaitlin: Chromosome Deletion, CHD, Neurological Differences

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Kaitlin had an average pregnancy, and delivery. Shorty after Mason was born, Kaitlin was told by doctors that he had “dysmorphic features.” He has a deletion of two separate chromosomes, a congenital heart defect, congestive heart failure, microcephaly, auditory neuropathy and many others. Despite the challenges, he is the light of his family’s life.

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