Ruby is a 14-year-old sweet and sassy teen girl with a rare genetic condition called Stromme Syndrome, which causes a vision impairment, microcephaly and developmental delays. Ruby’s geneticist believes there are less than 50 cases of Stromme Syndrome in the world! Ruby and her momma, Angie, share their story on social media to help normalize differences and promote disability inclusion.
Ruby’s health issues were discovered when her momma, Angie, was 18 weeks pregnant, during her first routine ultrasound. Doctors told Angie that Ruby had dilated ventricles, a small head (microcephaly), a bowel obstruction that would need surgery immediately after birth, failure to thrive and many other scary conditions. They said that Ruby might not walk or talk or do much of anything at all–if she even made it to her birth.
Ruby came into the world on November 11, 2004, at 3 lbs. 9 oz., 17 inches long, with a room full of nurses and doctors to greet her. Angie was induced seven weeks early because her amniotic fluid was depleting and Ruby was showing signs of distress. Ruby gave out the sweetest little cries Angie had ever heard, and after just a few minutes of getting to hold her, she was swept away to the NICU.
Over the next few days, Angie discovered that Ruby not only had microcephaly, but she also had microphthalmia (small eyes) with clouded corneas, which likely meant that she was blind. Ruby was diagnosed with a conditioned called, “Apple-peel intestinal atresia, ocular anomalies, and microcephaly syndrome” (now known as Stromme Syndrome). After 56 days in the NICU, with many ups and downs, Ruby was finally able to come home. She was only 4 lbs 6 oz., but she was eating well and slowly gaining weight.
Somehow, despite all of the challenges that she faced, Ruby continued to develop and grow. She sat up and crawled, laughed and ate solid foods. She walked just before her 3rd birthday and began talking around age four. Angie discovered that Ruby could see colors when she saw Ruby matching colored shapes together. Ruby began kindergarten on time and as the years went by, her personality blossomed and she became more outgoing and social.
In 2017, Angie and Ruby were thrust into the spotlight when one of their Instagram videos went viral. People were captivated by Ruby’s beautiful spirit and sweet personality. Overnight, Ruby became a spokesperson for Stromme Syndrome and hundreds of thousands of people from around the world have fallen in love with her.
Ruby and Angie live by the motto: “Today is a Good Day for a Good Day,” which reminds them that no matter what they are going through, they can choose to look for the beauty and goodness in life. Their strong belief in this phrase gives them strength and hope, especially on difficult days.
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