02/28/2026
Aveanna patient Norah lives with Trisomy 9 mosaicism, an ultra-rare condition affecting about 300 people worldwide.
Norah’s mom, Lori, knew the complexities of her condition would require specialized attention. Three years ago, Aveanna nurse Mary began caring for Norah, and Lori believes there is no better fit for her daughter and the unique challenges she faces.
“Mary has been so important for Norah and her interaction with the world,” said Lori. “Mary is by her side wherever we go, and Norah can see and experience so much because of that. She truly enables Norah to participate in adventures we could not do otherwise, and her support and kindness allows me to care for my other children’s needs and know Norah is okay.”
Mary’s care has done more than support Norah’s wellbeing; it’s filled her own cup, too. With special needs children of her own, Mary feels as though caring for Norah is like helping her own child.
“To get to be on Norah’s team and share in her life is very special for me,” said Mary. “I love getting to see the difference my care has made with the rarity of her condition. It brings me so much joy to partner with her family on their unique journey.”
This Rare Disease Day, we honor the individuality of those living with rare diseases and the dedicated caregivers who walk beside them. We are honored to be part of your journey!