August 03, 2012 by Victoria Strong

Meet this week's Project Mariposa grant recipients -- all 10 of them! Each of their stories are moving and reflect what remarkable people are impacted by this disease. We are thrilled to grant 10 iPads this week to help make the world just a little more accessible so they can achieve their dreams.

These 10 grants now bring the total Project Mariposa iPads granted to 62 over the last 26 weeks. Yes, 62 iPads helping 62 people in only 26 weeks. We are pretty proud of this. We always believe in moving research forward, we are passionate about advocacy at the state and national level, everything we do has an awareness slant, but it feels really good to help those living with SMA today. And we hope you feel good about it too because your support is making this happen! We are so very grateful for every donation that has helped create this program -- it is changing lives.

We are so pleased to introduce you to Project Mariposa grant recipients #53-63 >>

Grantee #53: Mikah Tobaben, Michigan :: "Mikah was diagnosed with SMA Type 2 when he was 1 1/2. Mikah is now 7 years old and since that time he has faced many challenges, but that has never deterred him from enjoying life, being an inspiration to others, and brightening the world around him. Mikah struggles daily with the task of putting his thoughts onto paper, as his hands tire easily when writing. An iPad would allow him to write a story (his "masterpiece") that he has been trying to complete for months now. An iPad would also allow him to relax and rest while watching tv or movies. This is important following a surgery or hospitalization, or just after a hard physical therapy session. Recently, Mikah has become interested in taking pictures of the world around him. It's so enlightening to see the world from his perspective. The struggle has been that a camera is heavy, and a shape that is not easy for Mikah to manipulate. An iPad would make it easier for him to explore this new interest. Mikah will also need the assistance of an iPad to stay in contact with the world around him, especially during periods of time when leaving the house is impossible. Mikah is a bright, funny, joyful child that deserves every chance to thrive. I trust and believe that he will accomplish many positive things in his future with the assistance of an iPad."

Grantee #54: Kelly Kirschstein, Ohio :: "Kelly was diagnosed with SMA 2 at the age of 18 months. She has blossomed into a beautiful young woman despite the obstacles she has had to overcome in her 19 years. At diagnosis doctors basically said take her home and love her which is exactly what we did. Kelly is a joy to be around, her sense of humor is addictive. She is attending Cleveland State University. She has completed a full year of college in 2 semesters. She is majoring in special education. Kelly's goal is to help children with disabilities. Kelly's ambition and love of life has inspired so many. Even as a child kelly has taught many life lessons. Kelly's SMA has progressed so much she can barely hold a pen. She travels daily to school with her service dog Jake and her aid to assist in daily activities. Day after day completing many hours of homework Kelly is exhausted but still she insists on carrying a full time credit hour schedule to complete her education. An iPad would help with class work and daily communication as even a laptop is too heavy for her to handle. Kelly is truly an SMA Warrior."

Grantee #55: Isabella Davis, California :: "Isabella Joy (Bell) is a precocious, joyful little two year old. She is so smart, already accomplishing tasks far beyond her age. She has continued to amaze everyone despite being diagnosed with SMA type 2 a few months before her second birthday. Through doctors appointments, hospital stays, surgery and frustration she has continued to grow into this amazing little girl. She has adapted to overcome her physical disability growing strong minded and determined. Already mastering her alphabet she now wants to learn to spell, write and read. She loves to sit and “read” books to herself. Her lack of strength greatly hinders her ability to write, hold or even turn the pages of her books. If Bell had an iPad she could practice spelling, writing and read books without being drained of all her energy. Game controllers are too heavy for her to lift but the iPad would let her play games and learn how to use technology, which will forever be a huge part of her life. Upon receiving her power-mobility her learning experience and curiosity soared. I know receiving an iPad would do the same for my amazing little girl."

Grantee #56: Mathieu Arotin, Ohio :: "Mathieu is 9 years old and has SMA type 2. He is incredibly smart but writing for him is often challenging, especially when the day has become long. The slimness and weightlessness of an iPad would give him the ability to take it everywhere. Mathieu's school uses what is called a Smart Board and they will be able to connect this right to an iPad and he will never have to leave his desk area or worry about not being able to reach. Mathieu also loves to cook and research new recipes, but he is always looking at me to assist him. He gets very frustrated because he is a very independent person and does not like to ask for help. Mathieu is an amazing little boy and lights up every room he goes into."

Grantee #57: Brady Kedge, Missouri :: "Brady has always shown a great love for learning and reading. He was a top member in his graduating class in high school and will be attending the University of Missouri this fall. However, as his disease has progressed he has found it harder to hold books to study. An iPad would greatly allow for Brady to read due to its light weight. It would also allow him to take it with him to school. An iPad would greatly benefit Brady because it would allow him to communicate with his friends and family without having to use the computer keyboard which is hard for him. I think that if Brady were to have an iPad his independence and ability to learn would increase greatly."

Grantee #58: Alexis and Zander Helfrich, Ohio :: "Both of our children would benefit greatly from this grant. They are wonderful, sweet, loving children who would be so appreciative of this gift. It would give them something to do together and it would provide entertainment and technology for them that we would not otherwise be able to afford. Our daughter, Lexie was diagnosed at birth with SMA. She is only 22 months but recently lost her ability to stand, even with assistance. She has been crying a lot because she realizes that something is wrong and that her body can't do what it wants to do. My sister has an iPad but lives far away. Whenever we visits, Lexie loves to play with it and can navigate around like a pro. It's amazing to see what she is capable of! She has a severe speech delay as well and is not developing as she should. We are hoping that an iPad would help her to learn new things, help her communicate, and listen to music, which seems to help her express herself. Our son, Zander, age 4, also has SMA. He is extremely talented at using technology. He can figure out how to do amazing things on a computer. He would really benefit from an iPad because he could draw and practice school skills which his hands get too tired for otherwise. He often feels excluded from physical activities with other kids his age and this would be something he could do with others or on his own. An iPad would be a wonderful and well-used tool for our family."

Grantee #59: Michael Kelley, Alabama :: "Michael was diagnosed with SMA 2 just before his second birthday. Although he has had several hospital stays with the flu and pneumonia, he has been doing really well these past couple years. He attends regular school and is an honor student in the 9th grade. As Michael has gotten older he has lost a lot of strength in his hands. The use of the iPad touchscreen would be so beneficial for him at home and in school. His workload has increased and he tires very easily trying to write, plus it would be good therapy for the use of his hands. Michael is also very social and he could use the iPad to connect with people and socialize. This would be wonderful for him! I just want to say that y'all are doing a wonderful thing. Not many families can afford this and it is a blessing for all our kids as their mobility is so limited."

Grantee #60: Jodi Nelson, Minnesota :: "I have SMA type 2 and when I was diagnosed the doctor said I'd never live past 3 yrs old... and then 5 yrs old. Now that I'm going to be 35 in June, I've been proud to surpass their expiration dates several times. I'm currently going to school for my Bachelor's degree in Criminal Justice. Carrying a bulky laptop is very difficult and this iPad grant would allow me to study and do activities that I'm currently unable to do. It could also help me with pain management as I endure an immense amount of pain daily and I could use the iPad away from home (park, school, etc.) to keep my mind occupied. No matter what hurdle life brings me, I live each day with no regrets. I am unable to purchase an iPad with my very limited income, so thank you for considering me for the iPad grant."

Grantee #61: Lucy Jones, Washington :: "Lucy has SMA type 2. A year ago we thought that was a death sentence. At two years old this is a bigger adjustment for us as parents than her. Over the past year we have made modifications to every aspect of our life but mostly our attitude towards our daughter, our future and this disease. We turned lawn chairs into lounge chairs, foot rests into tables and bath toys into building blocks. Her art table was raised to accommodate the wheelchair, her grandparents house's fitted with ramps and we moved and traded in our car to work for Lucy. All this is to say that everything seems to be different for her when all she wants is to be a ballerina and chase her cousin around the house. My husband and I only have work computers and when we bring work home she desperately wants to play on the computer but its so heavy to sit on her lap or unwielding to have on the table in front of her. She can work my husbands iPhone with ease and loves to play songs and sings along. She is so artistic that all of the paint type programs would be amazing. Lucy is in weekly physical therapy and they are amazing about working with her to push forward and achieve as much as possible. We have been trying to get her adjusted to a standing wheelchair and the iPad would be an amazing incentive to get Lucy upright."

Grantee #62: Karen Seeley, Arizona :: "I am 47 years old and was diagnosed with SMA type 2 at the age of 18 months. I am happily married for 13 years to my husband, Norm, whom I met in a chat room on AOL 15 years ago. Technology is a source of independence for me and I spend most of the day in front of my computer accessing the Internet to interact with friends and family, challenge my brain with sudoku, or managing websites for nonprofit groups. When I was younger and my arms and hands were stronger I used to draw and paint. Now that I'm older and weaker I find it difficult to do those hobbies, so I'm always looking for ways to be creative. An iPad would give me a way to utilize my creative energies and not be tethered to my desktop computer. I like your motto, Never Give Up, because it's been the way I have lived my life with SMA. I was blessed with parents who had the same attitude. It was a devastating diagnosis, as I'm sure you know all too well, but my parents determined that they were going to treat me as a "normal" child. That has made all the difference in my life. They made every attempt to make my life as typical as any other child's. I was surrounded by love and discipline and much encouragement to live my life to the fullest. I would like to add that I think that Project Mariposa is excellent. I've often thought that until successful treatments are discovered for SMA, our best chance for independence is through technology."

Congratulations everyone! We look forward to hearing about your successes with your new iPad!

If you have already applied and were not selected today, don't worry. Your application will roll over and you will be considered for one of the future grants. Please contact us with any updates or ammendments to your application. (Note: We must have a current email.) If you haven't applied yet, don't worry. We are accepting applications as long as this technology is making a difference. Don't forget to join us on Facebook -- next week's recipient will be announced there. 

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"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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