Three year old Levi doesn’t remember much about his baby sister Nora, or understand why she isn’t here with his family, but when he is tired he loves to snuggle with his “Nora blankets.”
These blankets were given to Nora’s family during their brief yet impactful stay at Ryan House. Tonight, Levi will sleep tightly wrapped in his Nora blanket. His mom, Jenni, will rub the small thumbprint necklace around her neck; this is all they have to remember Nora. They are happy to have it.
Levi and Nora’s parents, Seth and Jenni Darnell, were thrilled with the news of their second pregnancy and excited for Levi to have a little sister. At 20 weeks they were told that Nora had Trisomy 18. There is no cure for Trisomy 18 and most babies with the condition do not survive birth. Of those babies who survive, less than 10 percent reach their first birthday.
Ryan House helped Jenni and Seth learn all they could about Trisomy 18 and prepare for whatever their family’s journey might be. When Nora was born they decided to go directly to Ryan House. Once they had safely arrived, Jenni and Seth let out a sigh of relief. Knowing they had support and did not have to navigate Nora’s medical needs alone, they could finally enjoy their baby and be a family.
During their stay and then later at their home, Ryan House helped them to “treasure the memories.” Nora’s first and only photo with Santa, an ornament made from molds of her hands and feet, blankets that snuggled Nora — the Ryan House team documented the moments and milestones Nora and the family did have, creating a lasting legacy for Darnell Family.
“The memories that Ryan House made are all that we have left. We don’t get to hold her or hear her cry, we just have her feet and hand molds. That is what keeps Nora alive and what will allow Levi to remember his little sister. We don’t know what we would have done without Ryan House. Thank you!”