It is with our deepest condolences that we recognize members of our ULF family that have passed in 2018.
Tom, age 50, proceeded in death by his twin brother Tim in 2008. Both who had PMD leukodystrophy, were adopted at age 6 weeks by mother Sharon Spears and her former husband. Several years of being misdiagnosed, finally being determined to have PMD by ULF doctors at a conference in DeKalb. The boys went from walking with crutches to needing total care. Sadly, when Tim died (by a super bug following pneumonia), he was losing his ability to talk as did Tom. The boys participated in the PMD study done by Dr. Garbern and Dr. Kamholtz at Wayne State University. We found their birth family through the help of Dr. Hobson. It was found that the twins had a uncle, brothers, nephew, and great nephew with PMD. Their mother, sister, and niece are carriers. I wish to thank the ULF for their help and friendship over the years, I truly enjoyed the conferences in DeKalb. Love to you all, Sharon Spears