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Stephanie Walch

Fundraising for Arianna W's Freedom Concepts Tandem

Arianna is unable to ride a bicycle on her own due to her physical regression and seizures, but she loves to ride. Maintaining her physical abilities and independence as much as possible is a must due to her disease causing her to regress as she ages.

Arianna is unable to ride a bicycle on her own due to her physical regression and seizures, but she loves to ride. Maintaining her physical abilities and independence as much as possible is a must due to her disease causing her to regress as she ages.

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NaNa has a rare genetic disease called CLN2 Late Infantile Batten Disease. She grew up like the average child until she was 3 and began having seizures. The neurologist diagnosed her with Epilepsy due to an abnormal EEG. When she turned 4 years old she began walking differently and we began the process of seeing specialists to find out what was going on. One morning when I went to get Arianna out of bed for the day, she was unable to move, overnight she had lost the ability to walk on her own! It was heartbreaking for her and terrifying for her siblings. We strive every day to make it the best day possible because you never know when your last day will be! This bicycle would help NaNa feel independent while being safe and enjoying great family bike rides!

Aftereffects of her first grand mal seizure

When NaNa was born we had no idea she had a regressive disease. She learned to walk and talk. Her regression became physically noticeable when she was 4 years old she began walking on her tip toes and walking backwards.

Every other week NaNa goes to the hospital for about 6 hours to get medication put into a port placed on her head so the medicine can go directly into her brain.

She loves to drive the lawn mower with her brother!

As of now this is how we must ride bicycle. I strap her to me in an infant carrier and ride the bicycle. It is very difficult due to her long legs, but she absolutely loves it, making it worth it!

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Fundraising Progress
$1,195 raised of $5,800 goal
 

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1. Betsy Pillow
My father Don Erwin shared your story.
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2. Donald Erwin
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3. Donald Erwin
Happy to have the chance to donate to Arianna
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4. Frances S Tucker
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5. Donald T Erwin
For Stephanie Walch
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6. Donald T Erwin
Good luck Stephanie!!!