https://www.crowdfunder.com/p/zaydens-journey--with-congenital-myotonic-dystrophy
When my grandson's medical resources and treatment options were unavailable in West Virginia, where his parents lived, our family decided to bring him to Desoto County, Florida, where I reside. We made this move because Johns Hopkins All Children's Hospital is ranked 3rd in the nation for treating Congenital Myotonic Dystrophy Type 1. However, after relocating this precious boy, we quickly discovered that Florida, as a whole, lacks the comprehensive support services and funding necessary to truly meet the needs of my grandson and the broader special needs community in the state.
This project has several key goals: 1. To raise funds to continue meeting the care needs of our little Zayden. 2. To increase awareness about the challenges faced by the special needs community in Florida and advocate for expanded support services. 3. To establish a non-profit organization that unites advocates for the special needs population, enabling them to collaborate on securing increased funding and services. 4. To foster partnerships among agencies, service providers, insurance companies, and local businesses, ensuring better resource allocation and reducing waste within the limited resources currently available for these individuals.
Families in rural areas are often forced to drive 50 to 300 miles to access specialists for their special needs loved ones. Children requiring speech or feeding therapy often face wait times of nine months or more due to a shortage of services in their areas. Public transportation is either severely limited or nonexistent in many rural communities, while insurance-based contracted medical transportation is notoriously unreliable. This results in families missing critical medical appointments or, worse, being left stranded at appointments with no way to return home.
It deeply saddens me to see the lack of collaboration between politicians, government agencies, nursing agencies, local businesses, charities, churches, schools, and daycare centers. These partnerships are essential to building the bridges that special needs individuals and their families so desperately need. By improving coordination and fostering these partnerships, we can expand resources and services for the special needs population, create meaningful employment opportunities for both individuals with special needs and their family members, and reduce costs across agencies and communities. Together, these efforts would help cultivate inclusive communities that alleviate the stress and isolation faced by families, while empowering individuals with special needs to achieve greater self-sufficiency and independence.
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