The Iris Wolf Memorial Grant was established in May 2022 with support from Iris's parents, Chris and Stefanie Wolf, and countless donors whose lives have been impacted by this beautiful little warrior. Please take a moment to read the following message from her parents ...

 

Iris Louisa Wolf was diagnosed with Kabuki Syndrome at 6 weeks old after experiencing congenital heart defects, a cleft palate, and severe obstructive sleep apnea as a newborn. She spent 80 of her 118 days in the hospital, and as her family, we were fortunate to have a lot of supports in place: helpful family and friends, generous paid time off from work, good medical insurance, and an excellent children’s hospital near where our families live. When the good side of Iris’s heart suddenly failed, meaning she would no longer survive the next surgery she needed to repair her heart defects, we brought her home on hospice care and were able to complete a “bucket list” with her including meeting extended family members, riding on a boat, and visiting another state. We miss Iris’s strong, fighting spirit.

 

We have been wanting to use some of the money we would have spent on Iris’s care if she were alive to help other families of children with Kabuki Syndrome who may be experiencing financial hardship by assisting with some of the extra expenses associated with KS. We hope that this grant will make things a little easier for some members of our Kabuki family and also help us share Iris’s memory with others for years to come.