We are incredibly honored and grateful to be part of honoring a truly amazing human being. A man who loved the EB community just as much as we do, and spent his days making Kiira and her family's lives brighter, more joyful and filled with love. Any donation made in Rob's honor will go directly towards making a great difference in the lives of those living with Epidermolysis Bullosa. Your contribution will be part of many projects, including our upcoming Compassion Conservatory-a place for caregivers to gain tools and resources to avoid caregiver burnout and live a life of wellness, while also being pampered in as many was as possible! At The Butterfly Family Fund, it's about the entire family and we know how much Rob loved his. We are honored to be the recipients of any love from Rob and his family and we promise to make him proud with what we do.

A note from Kirsti, Rob's niece and also the mother of Kiira...

Rob McPherson was a happy-go-lucky guy. He faced the hardships of life with humor, always a joke on the tip of his tongue, quick to smile, and make others feel welcome. From the time I met him at 4 years old, I knew I could count on Rob to make me laugh and he was quickly deemed the “fun uncle.” As an X-Ray tech, he was helping people daily and lived his life as a caretaker to the very end. When Kiira was born with Epidermolysis Bullosa (EB), his desire to be a part of her life was strong. Rob and his wife, Nancy would babysit for us–one of the few that we would entrust with Kiira–and when she had her stem cell transplant in Minnesota, they flew from California to spend a week with Kiira and me, helping me navigate the difficult process. Soon after, Rob retired and he and Nancy would come spend the day with Kiira while I worked and when they moved to Oregon, we would visit them for a week at a time, enjoying the peace by their oceanside condo. Rob’s love for Kiira was apparent, and I know he wanted to see a cure happen, not just for her, but for all people suffering from EB. On the day before his heart attack, Kiira and her sisters, Miia and Aliisa, and I, had lunch with Rob. While he showed me a funny meme on his phone and spoke earnestly about the gift of life and second chances, he watched Kiira with tears in his eyes. He knows her life will be challenging, and I think he was sad not to be able to be here for her anymore, as he knew his time was short. He sat by my girls, asking them questions and making them laugh, just as he had done for me throughout my life.

When Rob passed on Wednesday, May 1, 2024, we were all devastated to lose such a vibrant, loving person in our lives. Even in his death, he helped people through organ donation and as one last gift to Kiira, he is supporting The Butterfly Family Fund. In lieu of flowers, the family is asking for a donation to this fund that supports families of those with critical medical conditions, many of whom have EB. The fund is so personal and active, providing gifts of joy to the families who suffer through so much, just as Rob provided so much joy to those who knew him. Please consider donating to The Butterfly Family Fund in honor of Rob.

Thank you!

Kirsti