Josiahs Minivan Fund

Did you know that it takes 50 pairs of muscles and nerves to perform the simple task of swallowing, something most of us do voluntarily? The typical verbal response to that question is “No”, and the non-verbal response is one of amazement and shock. The human body is so complex and intricate that even the slightest gene mutation can produce substantial havoc and interrupt normal body functions, such as swallowing. Ataxia-Telangiectasia (AT) is a genetic disorder inherited as an autosomal recessive trait. AT is the result of a genetic mutation of the ATM gene, found on chromosome 11. Most people are unaware of AT due to its rarity. AT impacts 1 in 40,000 – 100,000 live births.

 

I would like to introduce you to a few of the strongest and most deserving people I know: Josiah, Leroy, and Patricia Simpson. Josiah was born on May 31, 2011 to the late Dionne Wynn (Daughter of Leroy and Patricia Simpson). It was apparent early on during his infancy that Josiah was not developing normally and was struggling to meet developmental milestones. In 2013, Josiah was diagnosed with Cerebral Palsy (CP). The diagnosis was devastating to the family, but provided an answer to the many questions surrounding his development. One of the comforts of the diagnosis was that symptoms or manifestations of CP do not worsen over time. With CP, the damage done in utero cannot be undone, but it is not a progressive disease. Around 2018, we noticed that Josiah’s gait was worsening; his eyes were reddened, and his breathing, swallowing, and talking became more of a challenge. In 2020, Josiah underwent extensive genetic testing that confirmed he was misdiagnosed with CP and resulted in his new AT diagnosis. This new diagnosis was another extremely devastating blow that would lead to the next hurdle to overcome in providing Josiah with optimal care and support.

 

Leroy and Patricia Simpson are lifelong natives of Asheville, NC and will celebrate their 39th wedding anniversary on November 19, 2022. Leroy is currently employed full-time as a Sales Consultant at Professional Business Interiors (PBI) where he has worked for 27 years, and also works part-time as a Custodian at Mount Zion Missionary Baptist Church of Asheville, NC (Mt. Zion MB Church). Leroy serves as a Deacon and member of the Board of Directors at Mount Zion Community Development. Patricia is a retired Bank Teller, reaching a milestone of almost 30 years at Bank of America and serves as the Volunteer Coordinator for Mount Zion Community Development, Inc. (MZCD, Inc.), a 501(c)(3) non-profit community-based corporation that advocates for individuals disproportionately impacted by health, financial, and educational disparities, since her retirement. Although Leroy and Patricia are the biological parents of three children, they have spent many of their adult years raising and caring for their grandchildren, including Josiah. Raising Josiah has provided them with an immeasurable amount of joy and fulfillment; however, it has not been free of challenges. AT is a progressive and terrible disease. As Josiah’s mobility declines, the growing need of a wheelchair-accessible minivan increases exponentially. Josiah is wheelchair-bound and non-ambulatory without assistance.

 

To know Josiah is to love Josiah; he has the sweetest temperament and his smile will make your heart melt. Josiah is extremely compassionate, hardworking, and loving. He gives 110% every single day. He attends therapy three times a week and received all A’s on his latest report card. We are prayerful and determined to continue our search for a cure and treatment options that will award Josiah the greatest quality of life. The researched prognosis of AT is unfavorable, but we are choosing to focus on life one day at a time and maximizing memories while decreasing regrets.

 

I am Josiah’s eldest sister, Dreama Rice (Davis), and also a native of Asheville, NC. I would like to thank you for taking the time to read this heartfelt letter and allowing me the opportunity to share a glimpse into Josiah’s story. I am seeking financial assistance to help purchase a minivan that has wheelchair accessibility that would meet Josiah’s current and future health needs. If you would like to donate towards this cause, please visit the donation site, which will be kept up-to-date to reflect Josiah’s progress . If you would like to discuss other donation alternatives and/or seek more information, please reach me directly at [email redacted]. To learn more about AT please visit the following websites:

https://www.atcp.org/

https://rarediseases.org/rare-diseases/ataxia-telangiectasia/

 

Thank you again for your time and consideration.