Introducing the Face of Tag Days 2017: Norah, Age 6


Norah is an adorable 6-
year-old-girl who loves Elmo, swimming, and dancing to music--especially Justin Timberlake! Norah also loves to play with her sisters Emily, Makayla, Skylar, and Kieran, especially when it’s outside on a breezy day because the wind tickles her and makes her laugh!

When Norah was born, after an uncomplicated pregnancy and delivery, her mom Liz (a psychology faculty member here at U of M) noticed she had trouble sucking. The doctors and nurses weren't worried at first - it was nothing a lactation consult couldn't fix! Within a few days in the hospital, Norah had figured out how to suck on a bottle so she was taken home. After a few weeks, doctors noticed that Norah was having trouble gaining weight. They started going to the pediatrician weekly and bi-weekly to monitor her progress. In the mean time, her head was also not growing, and she wasn't smiling, making eye contact, or holding up her head. Many doctors appointments and specialists later, Dr. Steven Leber of CS Mott Children's Hospital noticed a dragonfly-pattern on Norah's brain scan. A blood test was able to confirm that she had Pontocerebellar Hypoplasia, type 2 (PCH). This is a rare and terminal genetic disorder that causes microcephaly, which means that parts of Norah’s brain that contribute to motor and mental function are underdeveloped.
 
Fast forward 5 and a half years later, and Norah is still receiving all her healthcare at C. S. Mott Children's Hospital. She currently is followed by neurology, gastroenterology, pulmonology, and palliative care doctors to make sure she stays in a happy and stable condition that allows her to spend time at home with family and do the things she loves to do! Norah's family is particularly grateful to the Child Life Specialists and Social Workers, such as Lorrie Carbone, who make sure they are provided with many resources to ensure Norah gets the care she deserves.

Norah and her family are so excited to be part of Tag Day's 91st year! They are so proud to join Galens in raising funds for wonderful organizations across Washtenaw County that help provide ongoing support and resources to kids like Norah.