I married my husband, Tom, in
1976. I was 18 years old. Two years later we moved to our home in Torrance CA
where we raised our family and built a wonderful life.
In October 2001, at age 43, I
received the terrible diagnosis of ALS.
At the time, my daughter was only 12 and my son was 19. The doctor said I had 2-5 years to live. I
was working full time as a health aide at an elementary school and had many
hobbies including quilting. My husband was a successful tile contractor.
My disease progressed quite
rapidly in the beginning. I had to quit work within 2 months since I could no
longer use my hands or arms and was losing my ability to walk. My wonderful,
amazing and loving husband quit working and became my sole caretaker. We sold
our home in Torrance in 2005 and moved to north Torrance so that we wouldn’t
have a mortgage. It was so hard to do at
the time, but it turned out to be a blessing in disguise! We are so happy in
our new home.
Early in my illness, my
family and friends (Ann’s Angels) helped me raise money for the ALSA
organization to help find a cure for ALS. I have also participated in several
drug studies at UCLA. My family and I volunteered at the Jerry Lewis Muscular
Dystrophy Association (MDA) telethon.
My family and friends (Ann’s
Angels) organized two wonderful fundraisers for our family. Because of the
money they raised we were able to purchase a handicapped accessible van. We’ll
be forever grateful and blessed to have their love and support.
I have lost of many of my abilities
such as, my independence, working, driving, walking, hugging my loved ones,
singing, quilting, speaking clearly, and taking care of my family physically.
Yet through it all, I try to remain the emotional strength for my family.
I feel blessed that I am still
here after 15 years. Only 4% of patient’s
survive longer than 10 years. I have seen my
son, Kenny, find a successful career in auto mechanics, help him plan his
wedding and witness his marriage to Angie, on 5-16-09. I even got to dance with
Kenny in my wheelchair at his wedding!
Angie brought into our family her wonderful daughter, Austin, age 7. I
have been lucky enough to see my daughter, Laura, graduate from High School, go
on to become a wonderful medical assistant, to help her plan her wedding and
witness her marriage to Andrew on 6-7-14! I got to dance again in my
Angie and Laura both have
babies now! Angie with twin boys, Luke and Ryder, and Laura with a girl,
Aubrey! I feel each day is a blessing and I live each one to the fullest! My spirit, faith in God, sense of hope and
humor shines on. I am so grateful for my
family, friends and to God for without them I would not make it through this
journey called ALS.