Laura, Jess, Ginny, and Jasmine are remarkable mothers whose paths crossed through their children’s diagnoses. Through shared experiences and care teams, this group of women have formed lasting friendships.
Their children, Charlette, Noah, Gino, and Jeremiah, share the diagnosis of osteogenesis imperfecta (OI) and receive compassionate care from the exceptional team at Nemours Children’s Hospital, Delaware. Under the guidance of dedicated clinicians such as Dr. Ricki Carroll, Dr. Jeanne Franzone, Tina McGreal, APRN, Licensed Genetic Counselor Andrea Schelhaas, Sarah Little, PA-C, Katie Harp, LCSW, and many more, these children are thriving in a nurturing environment full of hope.
United by a common journey, Laura, Jess, Ginny, and Jasmine were introduced to each other via an online group for parents of children with OI. Through these Facebook groups dedicated to OI, they discovered a community where fears were conquered, victories celebrated, and wisdom exchanged.
Laura recalls the moment when she first connected with Jess and Jasmine, stating, “When they came into the Facebook group, I commented on their posts, and we’ve been talking online ever since.” What began as simple virtual interactions soon developed into a shared understanding of the challenges and joys of raising children with OI.
Through the highs and lows of parenthood, Laura, Jess, Ginny, and Jasmine found strength in each other. They discovered a community of parents within Nemours Children’s that evolved into a cherished source of support and encouragement. “Having people that understand the stress and being able to eat lunch together or just meet in the hall for a hug gets you through that day,” says Laura. “This community is a beautiful family. We have all had a small hand in saving each child’s life, my daughter would not be here if it wasn’t for the moms in our community. I’m so thankful I can do the same now for the new moms.”
“Our friendships made along the way have given the mental boost needed to make the best-informed decisions that best fit our kids,” shares Jessica. “This community has given me the confidence and empowerment needed to be the best advocate for my son.”
Reflecting on the impact of these friendships, Jessica shares, “Seeing their beautiful babies gave me hope to know that my child can have a beautiful life outside the hospital.” This group showcases how impactful friendship and community can be to parents raising kids with osteogenesis imperfecta.
At Nemours Children’s Health, the journey of OI families extends well beyond hospital visits and treatment plans. It is a journey of shared experiences, collective triumphs, and unwavering support.
