Hannah was born with right lung agenesis, meaning she was born missing her right lung entirely. She has multiple heart defects, an immune deficiency, as well as other congenital anomalies. She was also born with a genetic condition known as 22q deletion syndrome. We just like to say she’s fancy.
She was exclusively tube fed for the first 18 months of her life and is on oxygen with sleep and with illness. She has been admitted to the ICU 5 times and has spent a combined total of nearly 5 months in the hospital. She has had more surgeries than I can count. Despite all she has been through, she is so determined and just radiates joy. Our family would not be the same without her.
What does A Kid Again mean to you and your family?
A Kid Again has been such a blessing to my family. Hannah spends so much time at doctors appointments, in the hospital, and in therapies, that the monthly adventures give her something positive to look forward to. As much as A Kid Again has been a blessing to Hannah, it has also been a blessing to her brothers. Being a sibling of a special needs child is difficult. Her brothers get dragged to appointments and therapies. They miss their mom as I spend weeks at a time at the hospital with Hannah. The monthly adventures mean something positive for them to look forward to as well. We get to attend events that we otherwise would not have the means or opportunity to experience apart from A Kid Again.