Finding Heather’s Hope - Stem Cell Transplant

Imagine Alzheimer’s disease meets Lou Gehrig’s disease, a memory and movement disorder which is Hereditary Diffuse Leukoencephalopathy with Spheroids. A rare disorder of the brain. My sister, Heather Brenneman-Boyer is in need of a stem cell transplant using bone marrow. She has a rapidly progressing neurodegenerative disease called Hereditary Diffuse Leukoencephalopathy with Spheroids. Heather is only 44 years old with a husband, 11 year old son and a 15 year old daughter. I am her sister, Heidi Brenneman-Edwards and I am passionate about helping Heather overcome the effects of this terrible disease. Without the transplant she will continue to decline. Day-by-day she will slow down, have problems walking, eventually be unable to walk, her memory will fade, she will not be able to control her emotions, hug her children tight and will become home bound. Her brain will forget to tell her how to talk, swallow, stand up...every involuntary movement we take for granted. This is an autosomal dominant gene. Our mom had the disease and passed the mutated gene to Heather. Heather’s children have a 50% chance of inheritance. If you have the mutated gene, CSF1R, you will get the adult- onset disease and will die from this disease....that’s what we have been told for ten years since my mom was diagnosed...until recently...there was no hope...a passionate doctor at University of Pennsylvania found HOPE. Dr. Murphy, white matter disease expert, found the first clinical trial for HDLS. The trial is at The University of Minnesota. They treat leukodystrophies, like HDLS, using bone marrow. In Minnesota, Heather will receive 10 days of intense chemotherapy, then receive a stem cell transplant using bone marrow. Her body will work hard to rebuild itself with these new cells. When she is allowed to leave the hospital, after 4-6 weeks, she will need to stay in Minnesota for daily follow-up appointments. Heather and a caregiver will need to live in Minnesota for 110 days. As you can imagine, this is a huge expense. Insurance will pay for the medical portion of the transplant but the family will need to pay for housing for 110 days, all food and other expenses required to live in an apartment and transportation to Minnesota and back home on multiple occasions for family and caregivers. Heather’s husband, Eric will have to continue working in his business while raising 2 kids. When, Eric can’t be in Minnesota a caregiver will have to replace him which will require travel expenses for that person since we have no family currently living in Minnesota who can help.