Katherine has a sister she never knew existed until she was 12 years old. A sister, who is profoundly disabled was placed in an institution as a young child. Katherine reconnected with her and has become her guardian.
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Katherine: A Guardian For Her Sister With Profound Disabilities
Katherine has a sister she never knew existed until she was 12 years old. A sister, who is profoundly disabled was placed in an institution as a young child. Katherine reconnected with her and has become her guardian. Surprise When Katherine was 12 years old she was...
Stories
Alyssa: Prader-Willi Syndrome
Kimber’s Prader-Willi syndrome diagnosis came as a relief to her parents. Her parents are grateful to have a daughter who is an inspiration to many.
Nancy and Daniel: PPP2R5D
Avianna was diagnosed with PPP2R5D, a very rare disorder, at age 3. Her parents learned the best thing they can do for her is being her strongest advocate.
Jenna and Dan: Pierre Robin Sequence (PRS)
It was discovered in utero that Ava would have PRS just like her dad. Jenna and Dan know what to expect but still rely on each other during challenges.
Sarah: Potocki- Shaffer Syndrome
Potocki-Shaffer syndrome is an extremely rare genetic disorder. So rare in fact that only a handful of people have been diagnosed with it. Betty, a sweet four year old, is one of those people. Her mom Sarah shared what life has been like so far caring for Betty and...
Miggy: Microgastria and Limb Reduction Complex
Lamp was diagnosed with microgastria limb reduction complex that affected all four limbs when her mom, Miggy, went in for her 18-week ultrasound. Shocked by the unexpected news, Miggy and her husband were devastated. Now seven years later, they realize how lucky...
Ann: Ataxic Cerebral Palsy and Seizure Disorder
Krissy was 10 months old when her mom Ann started noticing she couldn’t do typical things for children her age. Krissy was later diagnosed with ataxic cerebral palsy with a seizure disorder. Ann has since been a tireless advocate for Krissy and even started a...
Jessica: Pierre Robin Sequence, or PRS
Jessica and her husband were shocked to learn that their daughter, Eliana, was born with a cleft palate. A few days later they discovered she had some other abnormalities. She was diagnosed with Pierre Robin sequence. Bearing the Burden...
Ileana and Lorenzo: Microcephaly and Cerebral Palsy
Ileana and Lorenzo were told at their 20-week ultrasound that their daughter, Giselle, had some abnormalities with her brain. They were given the option of abortion but refused. Now three years later, Giselle has been diagnosed with microcephaly and cerebral palsy. ...
Leslie: Achondroplasia
When doctors first told Leslie that her daughter was measuring small, she didn’t put too much thought into it. She was told the same thing with her son, who was born perfectly healthy. However, after seeing a different doctor, he told her that her daughter would...
Bijan and Zach: Twins with 22q11.2 Deletion Syndrome or DiGeorge Syndrome, and Autism
After learning their son had some markers for a genetic condition in utero, Bijan and Zach were offered to abort one of their twin boys. They declined the offer and also declined in utero testing. Jackson was diagnosed with 22q11.2 deletion or DiGeorge syndrome. ...
