Story written for "Banding Together for PALS" - wanting to raise awareness for ALS -

Written Sunday, March 16, 2008
Marcie was diagnosed with ALS when she was only 23 years old

xxxxxxxxThis is when it first started...

xxxxxxxxxxxxxxxxFall of 1992
xxxxxxxxxxxMarcie was a junior in college.
xxxxxxxShe had just turned 22 in November
Her arms were failing her as she cheered and tumbled.
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What if your daughter was 23 years old, a senior in college, about to be out on her own for the first time?

Looking forward to try outs for the Dallas Cowboy Cheerleaders and she learned she had ALS (Lou Gehrig’s disease).

A disease which has no treatment or cure and only 10% of people diagnosed with ALS live more than 3 to 5 years.

Marcie’s life and the life of her family came to a dead stop!


That is what happened to my family and to my daughter, Marcie. A school leader and cheerleader in junior high, high school and the 2 colleges she attended. She had a very active life – running track, being a cheerleader and gymnast herself and then teaching young children gymnastics and coaching young cheerleaders in Arlington.


xxxxxxxxxxxxxxxxxxxxxAugust 1994 xxxxxxSummer of Marcie's diagnosis

Her elbows started hurting and her arms would not hold her up as she tumbled – something was wrong. Fourteen months later in January of 1994 we got the diagnoses - our 23 year old daughter had ALS – a disease which usually strikes in mid life – 55 is the average age for ALS – not 23. Yet we are learning more and more of young people being stricken with ALS. God has blessed Marcie and our family since we have been taking this journey for 14 years.

Marcie is paralyzed and she cannot talk and has not been able to talk clearly for maybe 3 years. On her 36th birthday she gave herself life by having a tracheostomy – on the true day of her birth - and being connected to a ventilator which breaths for her in order for her to live. We use a letter board and a computer to communicate with her. ALS takes everything but your mind and your spirit to live.

We use a letter board when she is not using to her computer. We must point to one letter at a time and she will blink at each letter until a word is formed. The computer has a camera mounted under the screen which is mounted to her wheelchair – this computer reads the retina of her eyes. This computer has opened her world to a little independence.

I stopped teaching 5 years ago to be at home with Marcie. She has not been left alone in 10 years – a friend, her Dad or I are always with her. Her dad is here at night and on the weekends so I do not do this alone. And friends do come by to visit but for the past four years her Dad or I are always here with her, even if she has a friend here. Emergencies happen and we do not want her friends to be responsible – at this point usually it is an equipment failure we are dealing with. But equipment is helping her to live (the ventilator).

Marcie is now 37 years old and living with ALS for 14 years. In her room she can control her TV, VCR, DVD and her radio. She can do Instant Messenger and send e-mail – she can communicate with her friends and family using her computer which she has had less than a year. She found, ordered and paid for all Christmas gifts for her family using her computer.

So that is her life and ours. I often wonder what her life and ours would have been without ALS in our life. But that was just not in God's plan for our life.

I think she would have been married, maybe had children and a perfect house with lots of hand made things inside. Marcie used to sew; making her own clothes, and did all kinds of crafts. Painting a little before ALS took the use of her arms and fingers.

ALS does not only affect the person with ALS but the entire family and all her friends. She told someone once she was “stuck between my parents” and she is. ALS has taken away a normal life as she should have had it. Our life is caring for our sweet girl, Marcie, and we are glad we have the ability to do that at home.

We have no idea why Marcie has ALS – but we do know it is all in God’s plan and with Him we live.


xx December 2003



March 2008 / Written by Linda / Marcie 's mom / Arlington, Tx


"Banding together for PALS" blog for stories of others living with ALS:

http://bandingtogether.blogspot.com/