During Angie’s first prenatal ultrasound, her doctor discovered baby Ruby wasn’t developing properly.  An amniocentesis didn’t provide a diagnosis and things kept getting worse.  Angie refused to terminate the pregnancy.  After Ruby was born, doctors said she had a rare, unnamed genetic condition with symptoms such as microcephaly, vision impairment, and bowel obstruction.  Her condition, Stromme syndrome, did not get a name until Ruby was 11 years old.

Diagnosis Made Mother Feel Alone

Ruby had a lot of complications at birth.  Her bowel obstruction required surgery when she was four days old.  “When she was born, she wasn’t able to eat because she would just throw it up right away,” Angie said.  Ruby needed to stay in the NICU for 56 days to learn how to eat and grow; she was only three pounds and nine ounces at birth.  “There were a lot of ups and downs in the NICU just getting healthy enough to go home,” Angie said.

Angie’s life wasn’t much easier once they were home again.  She felt alone trying to navigate doctor’s appointments, work, and being a single mom to a child with a rare disorder.  She worried about what Ruby’s future would look like.  Will kids bully her?  Will she make friends?  Can she thrive in school even though she has Stromme syndrome?  “There have been challenges every step of the way, but it has also been amazing,” Angie said.

Mother No Longer Worries about Daughter with Stromme Syndrome

Ruby has proven doctors wrong over and over again.  They didn’t believe she would walk or talk but she does both.  In addition to her physical health, Angie worried about how kids would treat Ruby at school.  “I am not worried about her anymore because she is one of the most popular kids at school and is so well-loved,” Angie said.  Ruby is also well-known and loved on social media.

A friend encouraged Angie to share Ruby’s story on Instagram.  Her account exploded with followers and they raised $15,000 through donations to buy Ruby a service dog.  “I just feel so blessed at the outpouring of love and acceptance that we’ve seen,” Angie said.

Angie credits her family with helping her get through the toughest times of Ruby’s life.  She brings the whole family closer together with her loveable personality.  “She is just a joy-bringer, that’s all I can say,” Angie said.

Words of Advice: Your Child is an Incredible Gift

Receiving a rare diagnosis like Stromme syndrome is scary.  “You’ve been given an incredible gift and an incredible responsibility,” Angie said.  Challenges strengthen Angie and she believes her life is exactly how it should be.  “I found my own healing in sharing her story.  I encourage other parents to do the same.”

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