Anastasia Wheelchair Transportation Campaign

Hello Friends and family,

Please support me in my Wheelchair Transportation Campaign for a young lady and young man whom I consider to be my own children, Amanda and Daniel Anastasia.

They are two of three children. Their middle brother Nick is able bodied and making his way in the world.  Amanda and Daniel have Aicardi-Goutieres Syndrome 2B (AGS).  Amanda and Daniel’s primary care giver is their mother Samantha who lives with them on a fixed income.  AGS is a rare genetic leukodystrophy that affects their motor function and ability to speak. This condition limits controlled movement of their extremities and core.  However, it has not limited their head control or cognitive ability.  Amanda and Daniel have great head control.  In fact, they utilize that head control to live their lives to the fullest. They drive power wheelchairs using head switches.  They “speak” using head movements and a laser pointer attached to their glasses.  They access technology using a head mouse or a stylus attached to a headband.  This is how Daniel writes on his laptop and Amanda paints. They are amazing human beings.  They may have their limitations, and some areas of their lives are more challenging than most, especially transportation, but every day they embrace life.  Amanda and Daniel are two of the happiest people I know.   

 Their current 2 wheelchair Chevy van is 18 years old and it has served them very well, but it's days are numbered.   Due to their physical disabilities Amanda and Daniel must travel in their power wheelchairs. They can’t get a ride from a friend, borrow a car, take an Uber, or even walk.   They always need to be driven in the van. Their lives would be very different without it. They are grateful to have it.  With the exception of school transportation, their van is the sole vehicle that has taken them any and everywhere for the past 18 years …. doctor appointments, church, movies, dances, shopping, out with friends, to visit family, painting classes, college classes, work, volunteering, to the train, vacations…..and so on.   It is an essential part of their lives. However, their current van has become unreliable and is just hanging on. When the van isn’t running, Amanda and Daniel’s lives’ are on hold until it is. They seriously need a new van, actually two. 

 Amanda and Daniel are pretty typical of young adults their age…  Daniel, 21, is a deeply faithful young man with a kind heart and a witty sense of humor.  He’s got a smile that lights up a room.  He can usually be found on his laptop with his music playing.  He is a big fan of Anime and comics, loves video games and you tube, but, his passion is writing.  In fact, he has known he wanted to be a writer since before he could even write.  Daniel’s mind is always creating.  He’s got so many ideas in his head he can’t write fast enough. His devotion to his writing is incredibly inspiring. He dreams of seeing his work in comic books, maybe even on the big screen.  As Daniel finishes up his last year of services in the local school district he has begun exploring his options for his future, like taking writing classes, volunteering and possibly interning.   

 Amanda, 26, has the biggest of hearts.  Anyone who meets her would agree she is a ray of sunshine.  An artist and self- proclaimed diva/fashionista, Amanda loves to be out and about, taking classes and volunteering, shopping, dining out and socializing.  Amanda discovered her talent for head painting a few years ago out of boredom.  A year later she began taking classes at a studio and her painting has soared to a whole new level.  She makes calendars annually showcasing 12 of her new originals and does some commission work.  She loves it.  Her classes and social life keep her busy. She volunteers at a rehab facility creating daily activities fliers for the patients.  She is a busy young lady.   Like most 26 year olds, she has the desire to live independent from her parents (with supports).  She has set a goal for herself to be “on her own” within the next year or so. 

 The future is wide open for Amanda and Daniel, with so many opportunities awaiting them. My Go Fund Me campaign is to help Amanda and Daniel obtain new vans so that as they spread their wings and their lives head in different directions they can do so with reliable transportation.

The ultimate goal is to appropriate approximately $125,000. I’m hopeful that this figure will accommodate the purchase of 2 vans and the necessary modifications. Due to the weight and size of the kids chairs a power lift is a necessity.

Thank you for taking the time to read their story, I hope it leaves you inspired.

 Grateful and Hopeful,

Daniel Grodsky
Family, Friend and Advocate