Healing Henley: Day 6

Friday, July 21, 2017

Day 6

Day 6- Someone was pretty happy to see her daddy today! We will draw labs in the morning and meet with her doctors. It's still a puzzle that we don't understand. Despite everything she's gone through the last few days, she has still managed to gain weight! At just over 7 weeks old, we have finally hit the 8 lbs mark!

Henley's Story

At 6 weeks old, Henley was hospitalized for 2 weeks and diagnosed with a very rare genetic bone marrow failure disorder called, Shwachman-Diamond Syndrome. It affects her bone marrow, skeleton, pancreas, kidneys, liver, brain, teeth and immune system. There is no cure for this disorder. This will be a life long condition that will require medication, surgeries and a bone marrow transplant.

This blog is authored by her mother, Jess. It was created to help our friends and family stay up to date on facts surrounding Henley's care.