We are a family made up of six siblings, and our father. Huntington’s Disease has claimed the life of one; three are actively battling the disease, and the rest of us our doing all we can to help them live as comfortably as possible. This is our story:
In 2009, our beautiful mother Aurelia lost her battle with Huntington’s Disease (HD).
Our mother was a very strong and determined woman. She and our father emigrated from a small town in Mexico with very little education and managed to raise six children in Southern California – working extremely hard to not only provide for us all, but also to realize the American dream.
Our mother was known for her beauty, and it was extremely difficult to see the manifestation of this horrible disease in her life. You may not have heard of HD, but HD symptoms are the same as the worst of those associated with other neurological diseases like Alzheimer’s, Parkinson’s and ALS. HD is a progressive neurological brain disease that robs a person of the ability to walk, talk, think, swallow, and control movement. And at this time there is no known cure for HD.
Unfortunately, that isn’t the worse of it; each of her six children had a 50% chance of inheriting the HD gene. Over the last six years, our brother, Joey, and sisters, Irene and Josie, have each been diagnosed with HD, and all three are symptomatic.
Joey was very athletic. He loved playing all sports especially basketball, baseball, and football. Although naturally more reserved, his love of sports and just by being part of such a large family helped him enjoy a very active social life. As he matured he was known as just being a nice, kind, sweetheart of a guy. The kind of neighbor you could ask for help and enjoyed family gatherings. In fact, one of the only signals that something was wrong with Joey at first was that his mellow deminer became a bit more volatile – and that was so out of character for him that people noticed. Today Joey is mostly happy keeping to himself inside his room. He now watches any and every kind of sport on tv. He needs a strict schedule to feel comfortable. All of his meals consist of simple and easy-to-swallow food. He still enjoys exercising, but his activity is now limited to daily outdoor walks for exactly 30 minutes. He is back to being mostly calm, mellow and friendly with the help of medication and his sisters’ care. Encouraging him to come out for the HD Hope Walk is one reason why we are sharing our story.
Irene has always been very intense, and self-determined. Her primary drive was for the care and welfare of children. Her dream was to become a teacher. She attended college and has a bachelor’s degree from Cal State Long Beach. It is tragic that as our mother’s condition worsened, Irene devoted her life to our mom. Unfortunately, the last few years of our mother’s life Irene also became more erratic and irrational, mostly with her self-image, and put herself on extreme strict diets as her symptoms started. Sadly, Irene refuses to accept that HD is affecting her health, while also suffering from delusions that impact her ability to leave her room or interact with other people. Irene’s sheer determination is what will keep her fighting the disease for as long as she can.
Josie was and continues to be everyone’s sweetheart. She is the baby of the family, always doted upon and adored. In high school she was pretty and kind and friendly, and became the Homecoming Queen her senior year. After high school she attended USC. After learning of her mother’s illness in college, she changed her major to be occupational therapy in order to be able to educate herself and her family members on ways to help our mother. After college she successfully progressed in her career to become the supervisor of the occupational therapists in a well-known hospital. She also found love and married her husband Felipe, and had three children, Amanda (now a sophomore in college), Yvonne (now a high school senior) and Junior (4th grade). All three of whom are at risk.
Although Joey, Irene and Josie are currently facing new and different challenges daily, they remain hopeful — their faith in God has even strengthened!
Please consider donating to our cause and/or coming to join us on this year’s walk to help raise awareness. It would mean so much to our family to have your support.
All of us celebrating Joey’s sports themed birthday party last year.
From left to right Irene, Juanita, Joey, Josie, Irma, back row Javier