Parent Stories

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Most Recent Stories

Caitlin and Dallin: Spinal Muscular Atrophy, or SMA, Type 1

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Caitlin and Dallin’s daughter, Auni, was 4 months old when they realized she wasn’t developing typically. When Auni was 7 months old, she was diagnosed with Type 1 Spinal Muscular Atrophy, or SMA, which is a terminal diagnosis. Auni lived 22 months before she passed away. Caitlin and Dallin open up about the emotional journey they have been on, and the gift Auni was to them, and the joy she brought to their lives.

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Maria and Brandon: Chromosomal Deletion 9Q

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While Maria was pregnant with her son Chase, a prenatal ultrasound revealed a cleft lip and some umbilical cord abnormalities.

After Chase was born, testing revealed he was missing part of a 9th chromosome on the Q branch, known as Chromosomal Deletion 9Q. Chase is the only known person with this condition, in it’s severity, in the whole world.

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Lacey: Tessier Cleft lip and palate and Micropthalmia

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Doctors told Lacey throughout her pregnancy, that her unborn son Christian had many complications. Once Christian was born, doctors diagnosed him with Tessier Cleft lip and palate with Micropthalmia.

Lacey says although it can be difficult when people stare, or give them looks filled with pity, Christian has has brought them an incredible amount of love and joy.

Lacey has written a book about her experience as a parent of a child with special needs, you can find it here.

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Kelly and Zac: Dwarfism- Achondroplasia

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Kelly and Zac were blindsided when tests showed that their newborn son, Everett, had Achondroplasia– a form of Dwarfism. They grieved for the life they thought they were going to have; and were fearful for a life they knew nothing about. They found peace and hope through God, and learned not to be fearful for the future. They intensely love their son, and have built a community of support for their family. They consider themselves blessed to be Everett’s parents.

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Kim: CHARGE syndrome

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When Kim went in for a prenatal ultrasound, doctors found her baby had a cleft lip and a heart defect. After her daughter Jackie was born, it was discovered that Jackie had CHARGE syndrome. In the begining Kim struggled with how to cope with Jackie’s diagnosis. Jackie has changed Kim and her family’s world for the better. She has shown them what really matters in life, and that it is precious.

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Kierra: 22q11 Deletion syndrome, Tracheomalacia, Pulmonary Atresia

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While pregnant, Kierra went in for a routine ultrasound and was told her daughter, Evanna had a major heart defect. Doctors found several other indicators that pointed to Evanna having 22q11  Deletion- also known as DiGeorge syndrome.

After Evanna was born, Kierra and her husband received an official diagnosis of 22q11 Deletion syndrome.

When Evanna was 5 months old she had her first open heart surgery; and subsequently spent 400 days in the hospital due to complications.

Evanna has a major heart condition know as Pulmonary Atresia– MAPCA’s (Major aortopulmonary collateral arteries) which is often a complication found with 22q11 Deletion syndrome. She also has a critical airway, known condition known as Tracheomalacia.

Visit Kierra’s blog at theirvinefamilyblog.com

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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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Karen: Down syndrome

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During her pregnancy Karen saw a high risk obstetrician- because of her age. She had routine prenatal ultrasounds and screenings and all results came back normal. Shortly after her son Caleb was born, Karen was shocked to learn he had Down syndrome.

Karen is a fantastic support and advocate for her son, and all individuals with disabilities.

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