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How I Find Hope Four Years After a Life-Changing Diagnosis

This month, our client Kara Toomey celebrated a complicated anniversary: four years since she was diagnosed with a life-changing autoimmune illness.

While the diagnosis has introduced new hardships and challenges, Kara is finding a reason to believe in hope as her community helps to bring independence and mobility back within her reach through fundraising. 

“One day, my life was normal…the next morning, I woke up completely paralyzed.”

In 2017, Kara was diagnosed with autonomic ganglionopathy, or AAG, out of the blue. The extremely rare disorder causes the body’s immune system to attack the nervous system.

“The immediate onset of this disease took away things I had previously taken for granted, like walking, driving, working, and hanging out with my friends and family.”

Just one hundred Americans are diagnosed with AAG each year., and there is no definitive cause, treatment, or cure.  

“Literally overnight, I lost my independence, which then led me to lose my sense of confidence. It significantly impacted my self-esteem.”

Fighting through the immense challenges of the diagnosis, Kara found a new source of hope: a pathway that would allow her to learn to drive again. By driving independently, Kara could fully re-integrate into her community, gain a sense of freedom and independence, and, depending on how her symptoms progress, potentially even return to work. 

On June 24, she got her license.  

On August 3, she went to work at a trial position for the first time in four years.  

Until she can afford an accessible vehicle of her own, Kara must depend on her parents to get her to and from opportunities like this trial position. Kara says she is already $18,000 in medical debt due to AAG. 

“Driving lessons cost upwards of $600. Retrofitting a car for accessibility is at least $5,000, and purchasing a car to retrofit would be $20,000 or more.”

In 2020, Kara began fundraising with us to help cover the costs associated with ongoing medical care, mobility, and accessible driving. Fundraisers have included a 5K event, a cupcake sale, Facebook Fundraisers, and even an authentic New England whoopie pie sale.  

Fundraising has already helped Kara to cover the cost of driving lessons plus pay off critical hospital bills and overdue medical bills, secondary insurance to reinforce her Medicare benefits, and co-pays associated with essential medications.  

“Fundraising has been a godsend, and all I have accomplished so far could not have happened without your love and support. Thank you for helping this amazing dream come true.”

Using her Campaign Page and a public Facebook Group, Kara amplifies her voice, shares her story, and gives others a glimpse of the social and financial burdens that individuals with chronic illness and disabilities face on a regular basis to help inspire understanding and change.  

For Kara, the impact of fundraising and community support—both online and in person —goes beyond the funds she raises: 

“Being seen and feeling like someone really sees you feels amazing. I am so grateful.”

Leave a Guestbook message or subscribe to Kara’s story by visiting her Campaign Page 

Written by Emily Progin