Our sweet girl, Wynne Grace Mateffy passed away peacefully in her Mother's arms Thursday, June 9th. She was 17 months old. She passed as she lived, surrounded by family and love.
Wynne was the happiest most beautiful baby. Her smiles and giggles sent waves of joy through everyone lucky enough to see them. To know her was to fall deeply in love with her. She could not see or hear but she clearly knew she was surrounded by love. She spent most of her life with her Mom receiving endless cuddles and kisses - their bond was truly incredible.
Wynne was born with Peroxisomal Biogenesis Disorder (PBD). This terrible disorder gradually steals a child's vision, hearing, movement and cognition. Wynne's incredible strength inspired the creation of the Wynne Mateffy Research Foundation (wmrf.org). The WMRF is working with the National Institutes of Health to screen thousands of compounds for an effective treatment. At the University of Wisconsin, the Wynne Mateffy Professorship of Peroxisomal Disorders has been created. Wynne's smiles and love will never be forgotten - we are hopeful her legacy may also include a cure.
Wynne had a truly wonderful team of caregivers. She had a special relationship with each of them. She was surrounded by a loving extended family - her Grandmas in particular, who provided endless amounts of care and love.
Wynne is survived by her parents Caiti and Josh Mateffy, her grandparents Colleen and Bill Deppa and Candy and Dale Mateffy and many aunts, uncles and cousins. She will be cared for in heaven by our precious loved ones who preceded her in death. She will be dearly missed. We take comfort knowing that she is in a better place and finally has the body her beautiful soul deserves. Our dear sweet Wynne was and will forever be immeasurably loved