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Project Mariposa :: {WEEK FORTY THREE}  iPad Grants #83-89

December 14, 2012 by Victoria Strong
Project Mariposa :: {WEEK FORTY THREE}  iPad Grants #83-89

Project Mariposa :: {WEEK FORTY THREE}

Spinal Muscular Atrophy is a genetic disease. This means if both parents are carriers of the SMA gene, with each pregnancy there is always a 25% chance that their child will have SMA. (Learn more about SMA genetics HERE.)There are many families with multiple SMA children. Sometimes the children are twins. Sometimes the second was born before the first was diagnosed. And sometimes every child within a family is impacted. One thing that always comes through with SMA siblings is their unique and very close bond. Who else to better understand than a brother or a sister experiencing the same struggles. For parents, this means multiples of everything -- power chairs, medical equipment, larger handicapped vans, double therapy sessions. And so, when it comes to an item like an iPad, it is simply out of reach.

Today, is week forty three of Project Mariposa. And today we are granting an iPad to families with multiple SMA children. Their stories are compelling. They are all incredible people -- funny, smart, determined, and many selflessly wanting the iPad for their sibling over themselves. Grab a tissue because you will be moved by these remarkable families!

These 7 grants now bring the total Project Mariposa iPads granted to 89 people over the last 43 weeks. That is 89 lives changed! But we still have hundreds of Project Mariposa applications -- and they are all inspiring people so deserving of this incredible device that will help make their lives easier. Our goal is to help every person with SMA have the tools they need to succeed -- but that requires funding. With YOUR help we can do it! For less than $500, a life is changed forever! 

We are honored to introduce you to Project Mariposa grant recipients #83-89 >>

Grant #83: Linh and Quoc Huynh, Michigan :: "Quoc is the youngest of four and the second sibling with SMA (I'm the oldest and also have SMA). Because our parents don't speak English, they rely heavily on us kids to help them manage bill payments, etc. Quoc has always loved managing the online bill payments. I think it gives him a sense of being needed, rather than always being the one who needs help. He takes a lot of pride in being able to do so much for our parents. A few years ago, Quoc lost the ability to sit up. This also took away his ability to do a lot of the things he used to do, such as type on the computer and play video games. The limitations put on him when using the computer has also gotten in the way of his education. He is homebound and sometimes he has trouble completing assignments because of these difficulties. I strongly believe he would be able to do more of the things he loved so much with the help of an iPad. I feel the iPad would give him independence and reduce his stress levels."

Grant #84: Kyle and Lauren Byrd, Arizona :: "At 5 years old, Kyle & Lauren have outgrown their baby toys yet lack the motor skills required for most of their age-appropriate toys. Additionally, the twins are so cognitively advanced that they would excel with a high-tech device such as the iPad. With educational apps and apps which encourage creativity and role play--in addition to a screen sensitive enough to recognize their light touch--an iPad would be ideal way to keep their minds busy and add fun to their days. Lauren is already reading sight words and more, and she is months away from beginning kindergarten. And as Kyle demonstrates to us on the Wii nearly every day, he is already tech-minded and has the patience and persistence to figure out how to make anything work for him. An iPad would help them continue to build their reading skills and reinforce how amazingly easy, intuitive, and useful technology can be. The gift of an iPad for them to share would be great news around here!"

Grant #85: Kaelan and Karlie Henry, California :: "Kaelan is our 10 year old son who was diagnosed with SMA Type 1 at 4 months old. Our daughter Karlie also has SMA. They have 2 older siblings that are SMA free. Kaelan and Karlie are so full of life and are very outgoing. An iPad would benefit them tremendously. It would open up doors and give them the opportunity to do their own tasks, like to do their homework themselves. They try so hard and love to do all things by themselves."

Grant #86: Sarah and Scotty Carlson, California :: "My brother and I both have SMA Type 2. He is 21 and I am 25, and we are very fortunate to have a loving mother that does everything she can do for us. For 8 years we have kind of been on our own because my dad left and hasn't seen us or supported us since then. I think an iPad would be a useful tool for me. Since I no longer have any function in my left hand, and the keyboard is nearly impossible for me to use, touch technology seems ideal. With my mom supporting the 3 of us single handedly from home, an iPad is out of the question for us right now, so I would really appreciate your consideration for this grant. I think an iPad would be really beneficial to my brother and I, especially when it comes to typing or writing out schoolwork, and reading books. It would just make life easier."

Grant #87: Kennedi, Jaycie, Bentley Vondrak, Iowa :: "All three of our daughters have SMA Type 2. Kennedi is 7 years old, is in the 2nd grade, and was diagnosed with SMA Type 2 shortly after her 2nd birthday. Jaycie is 5 years old and is attending Kindergarten. Bentley is 2 years old and attends an integrated preschool. All the girls would benefit from the iPad for educational use and to work on fine motor skills to help maintain them. Kennedi loves music, Barbies, drawing, writing, reading and is a social butterfly in the community. Jaycie loves horses, drawing, reading, watching movies and playing Polly Pockets. Bentley loves coloring, puzzles, and would enjoy looking at and listening to books on the iPad. In addition to education skills and increased independence, all three girls could use the iPad for FaceTime and Skype to communicate with family they don't get to see very often."

Grant #88: Kalen and Kyan Kulas, New York :: "Our only children, Kalen and Kyan both have SMA Type 2. Kalen is a 2 1/2 year old boy and his brother, Kyan, is 1 year old. They could use an iPad in a variety of ways including as a communication device, for art projects, for typing and letter recognition, for watching programs and ultimately for school work. Thank you for your consideration!"

Grant #89: Dana and Daniel Jones, New York :: "My son Daniel Jones, 12 years old, was born with SMA II. Daniel's hand strength is highly compromised by this disease. It is very hard for him to write with a pen or pencil, he is not able to play typical games, and has a scribe write for him in school due to hand fatigue. I believe an iPad would be a very positive experience for him and allow him freedom with games, handwriting for homework, reading books without dropping the book and loosing his page. Ultimately take a lot of frustration out of his life. The iPad truly has no limit. He would not be able to lift to use the camera but it could be set up on a table, SMA eyes are so keen. I have two children with SMA II. My daughter, Dana, is 14. Due to the advantages of this to SMA kids....my daughter would like to know if she could share this iPad with Danny. Kids are very funny....I would never apply for two. They would share. I cannot say enough about your foundation -- I draw a lot of inspiration from you."  

Congratulations everyone! We can't wait to hear how you are all using your new iPad and how it is opening your world. Learn more about the Gwendolyn Strong Foundation's iPad support program and how you can get involved Project Mariposa.

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