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Project Mariposa {Month TWO} Recap

April 03, 2012 by Victoria Strong
Project Mariposa {Month TWO} Recap

We are now two months into Project Mariposa and twenty one iPads have been granted to individuals with Spinal Muscular Atrophy. 21! Twenty one lives have been made just a little bit easier because of these incredible devices. And while they are all fighting the same disease, they each have their own stories.

Please meet the March grantees #18 through #21 and hear a few update stories. 

{WEEK SIX} Grantee #18 :: Deirdre Medina-Rivera, New Jersey :: "Deirdre was born in Puerto Rico with SMA Type 1. We moved to New Jersey to give Deirdre the best medical treatment for her condition. We left our jobs, families, friends, and lives back in our little island. Deirdre's life depended on it. Four years later Deirdre has proved to us that all sacrifices have been worth it. Technology is the main support that our kids with SMA have to show the world that they are brilliant, and that they can do anything given the right tools. An iPad would allow Deirdre to communicate on the go. She would use it for school, entertainment, and to reach occupational therapy goals (art therapy, socialization, engage her in more finger/hand control, hand/eye coordination, interaction & participation in activities)." Congratulations Deirdre!

{WEEK SEVEN} Grantee #19 :: Melissa Milinovich, Ohio :: "Having SMA is rough, being a single Mom with SMA is even harder. Although I try to be as strong and independent as I can be, there are times when the disease gets the best of me. When I am ill or dealing with one of the many complications of SMA, there are times that I am too weak to get in my chair. Having an iPad would mean that I could still communicate with people, work, and be a Mom even when I am not up to par. An iPad would be great for me as it is not something I can afford to buy myself." Congratulations Melissa!

{WEEK EIGHT} Grantee #20 :: Van Bernard, Nova Scotia, Canada :: "At 8 months of age Van was diagnosed with SMA type 2. Our world changed and we became pros at coming up with creative ideas to adapt "normal" toys for his use. The iPad is user friendly and doesn't require any adaptions! Van is now four year old and is starting school this September and would benefit greatly from an iPad for its reading, writing and math applications. The light touch of the iPad is easier to manipulate than a keyboard and due to his condition he will grow up in a computerized world becoming dependent on its uses. Most importantly, the iPad can offer my son a sense of independence as he can utilize this technology on his own!" Congratulations Van!

{WEEK NINE} Grantee #21 :: Autumn Persinger, Michigan :: "Autumn was diagnosed with SMA II when she was 1 year, week, and 3 days old. She is an amazing girl who needs to express herself. Autumn is very artistic. She loves to draw, to color, and write. She loves listening to music and playing instruments. Because of her disease, she is unable to fully express herself in this way. She can't pull of marker tops herself, she fatigues using pencils and crayons, and struggles holding her body in the correct position. Instruments, even children's plastic ones, are too heavy for her to play with for any length of time. She loves music, but CDs are difficult for her to open. SMA takes so much, and I want her to have fun and make the most of her abilities. This technology will allow her to do just that." Congratulations Autumn!

{UPDATE STORIES} 

This is Ayden using Facetime on his iPad to go to school. That's right! While Ayden isn't phsyically in school right now he can Facetime with his classmates so he can experience the same activities they are and visit with friends at school. And the other kids loved saying hello and waving to him.

From Wren's parents: "Wren absolutely shines every single time she talks about her iPad. She is so proud to have her own and to be able to do the things with it herself. Previously homework used to frustrate her because she would get so tired with writing and using her arms so much. Pre iPad there were times she would cry and be so sad about the schoolwork. It wasnt that she didnt like it -- she loves school -- she was sad that it was so hard for her to write and color "like the other kids do." Since being selected as a Project Mariposa recipient, I am glad to report no incidence of anxiety or crying related to homework. She has been so much less concerned about keeping up with her classmates. She types up her book reports on it and loves that she can do all this on her own and not be so exhausted. When she uses it to type she is less frustrated because her body can keep up with her mind. Her fellow students think it is so cool. They like to read books on it with her during book look time. And Wren impresses them with her skills at navigating the apps and features. It has helped her confidence in her abilities and given her more tools for her to be able to excel in school. This iPad grant has absolutely improved her quality of life and supports her to be one of the gang at school. We are so thankful for this. It is difficult to quantify or truly explain in words. My best advice to any potential funders or sponsors for Project Mariposa is this:

If their goal of donating is to make meaningful difference in the lives of someone with SMA -- then support Project Mariposa.
If their goal is to have lasting impact with a simple gesture -- then support Project Mariposa.
If their goal is to bring the biggest smile that they can imagine to someone with sma -- then support Project Mariposa."  

We hope you enjoy these stories as much as we do. Week ten grants will be selected this Friday. And there may be a surprise... or two, so be sure to check our Facebook fan page this week! 

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Project Mariposa Project Mariposa

"Project Mariposa" is an initiative of the Gwendolyn Strong Foundation (theGSF) with a simple mission: to make the world more accessible to those with severe disabilities through iPad technology...

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