High-school senior Michael De Sousa (pictured) has a lot on his mind -- basketball practice, volunteering, the Air Force Academy -- and most important, his mom's degenerative disease, leukoencephalopathy.
De Sousa's mother, Patricia De Sousa, was diagnosed with leukoencephalopathy, a degenerative brain disease, in 1997. Patients with this disorder tend to be diagnosed with multiple sclerosis first. As the disease progresses, patients display symptoms of multiple sclerosis and Alzheimer's. Other symptoms they display include being absent-minded, confusion, fits, and loss of balance and motor skills.
Michael and his sister, Melissa De Sousa, do what they can to keep their mother comfortable. But some days can be more challenging than others. For
those days, De Sousa turns to his blog, "Students with Disabled Parents," where he shares his experiences with others.
The idea behind the blog, he said, is to show other young teens who are going through the same thing that they are not alone.
"I want this to be a place where everyone going through the same thing can go to," Michael De Sousa said. "Sometimes people might feel embarrassed, but this is a place where they can talk about it and share what they are going through."
Since Michael's mother was diagnosed at 32, things have changed at home.
"She used to inject herself with the medicine," Michael De Sousa said. "But as she got worse, we started to do that, and now she's actually on several medications."
Other members of the family, including Michael's father, Paul De Sousa, were also affected by Patricia's illness.
"Suddenly I knew that my daughter would be turning to me for questions that I didn't know if I would be able to answer," Paul De Sousa said. "So I started checking out books and reading them so I could be prepared when that day came."
Before his mother was diagnosed with the disease, Michael described his mom as a beautiful woman who would always be with him at school and go with him and his sister to parties.
The first sign that something was not right with his mom came in 1997 when Michael noticed that she wasn't walking as quickly, and then her muscles became stiff.
Now his mother needs help with everyday tasks. The family -- Michael, his sister and their father -- help her bathe and brush her teeth, as well as with other basic necessities.
Some days are more difficult than others, but through it all, the family gets through it, said Paul De Sousa.
"We use our humor," he said.
"We are always joking in my house. Either we poke fun at each other, or we poke fun at ourselves. And Michael just continues to try to raise awareness about this degenerative disease."
Since his mother's diagnosis, Michael De Sousa has read up on the disease so he can be up-to-date on the current research. He began bottled water sales in the area to raise money to research multiple sclerosis in the hopes of a future cure or better treatments.
All the money raised goes toward research for a cure to the National Multiple Sclerosis Society chapters in El Paso and in Long Island.
Friday, July 29, 2011
Texas high school student starts blog to support other kids whose parents have degenerative brain diseases
El Paso Times:
Posted by BA Haller at 9:18 PM