Changing lives with iPads : Santa Barbara foundation helps SMA patients to communicate

Victoria Strong teared up as she recalled the moment her 4-year-old daughter, Gwendolyn, was finally able to tell her, "I love you, Mommy."

Before that happened, Gwendolyn, who is unable to speak or move other than tapping her index fingers, couldn't have said the words.

An iPad changed all that.

By tapping on two cellphone-like iPod touch devices, the Santa Barbara girl can pick icons on an iPad screen attached to her wheelchair. One device allows her to move the cursor to an icon; the other, to select it.

On the day her mother will never forget, Gwendolyn chose an icon of a heart and her mother's face. She looked at her mother as the iPad played a recording of her father Bill Strong saying, "I love you, Mommy." Before that, Gwendolyn's communication with her parents was limited to eye contact and sounds they recognize as meaning "yes" or no."

"As a parent, I had never gotten to hear her say it ('I love you')," Mrs. Strong, 35, told the News-Press recently at their Santa Barbara home. "That was a pretty big day."

Knowing how the iPad helped their daughter, Mr. and Mrs. Strong this year launched Project Mariposa. It's part of their efforts through the Gwendolyn Strong Foundation, which has raised more than $1 million to help others who, like their daughter, have spinal muscular atrophy.

Since February, Project Mariposa has supplied 67 free iPad 2s, along with a $50 gift card for computer applications, to families in 25 states, Canada, the United Kingdom and Germany, Mr. Strong said. The plan is to give out at least 100 this year.

Recipients have included a 4-year-old Carpinteria girl, another child in Ventura and a third in San Luis Obispo.

To apply, go to Various nonprofits and individual donations have made the program possible, and Apple sold the iPads for $500 each to the foundation through a business discount, Mr. Strong said.

"The (iPad) grants we have given thus far have run the gamut from 16-month-old babies to someone who is almost 50 years old," Mrs. Strong said. Most recipients are children.

Spinal muscular atrophy affects the ability to move, sit up, walk and speech, Mrs. Strong said. "But the most important thing is that the cognitive ability is never affected.

"So just like with Lou Gehrig's disease, they (children with SMA) are smart and social and playful and have wants and are very determined. With every application that we receive (for an iPad), there is this desire for independence, to turn the pages of a book (on the computer) by themselves, to be able to speak."

And Mr. Strong has designed a new free application called Say Hi! AAC, which allows children such as Gwendolyn to tap choices such as "yes" or "no" to answer questions.

The application also allows the placement of up to nine icons on a page. They can be words, phrases, pictures or audio recordings, and Gwendolyn and others can pick them to express themselves.

Want to know how Gwendolyn is feeling? This is the app for that. She can pick from nine icons for happy, sad, frustrated, etc.

The possibilities for iPad applications are endless, and each iPad is customized to the child's needs and abilities, Mr. Strong said.

Mr. and Mrs. Strong cited examples of children with SMA being able to pick their clothing or what they want to eat by tapping on photos on the iPad.

The iPad also can help children such as Gwendolyn learn to read, write and spell.

Mr. Strong said he is working with her kindergarten teacher at Washington Elementary School in Santa Barbara so that Gwendolyn will be able to give "yes or no" answers in the classroom on her iPad.

The iPad also allows home-bound children to participate in school classes through Skype (live streaming with a camera in the classroom).

And the device, Mr. and Mrs. Strong stressed, is giving kids the ability to express themselves. They can draw or play the piano on the screen.

"They can create videos, they can edit photos, they can share photos," Mr. Strong said, adding that the iPad allows children such as Gwendolyn to play games with their able-bodied friends and to communicate with others online.

Chuckling, Mrs. Strong said she is looking forward to the day her daughter will send her an email saying, "You're fabulous!"

On the day Gwendolyn told her mother she loved her, it was an accomplishment that boosted the child's self-esteem, Mrs. Strong said.

"You have to understand," Mr. Strong said, "for someone who has very little independence, it's life changing."




Talk About It