What is the cost of a good night’s sleep? For some families raising children with a disability, a good night’s sleep comes with a price tag upwards of $10,000. For these families, specialized safety and medical beds aren’t just a luxury—they’re essential tools that can significantly improve their quality of life. For that reason, Variety KC and Maddie’s Mission have teamed up to provide this life-changing support to Kansas City families so that caregivers can rest well at night, knowing their children have a safe place to sleep.
Maddie’s Mission is a local nonprofit inspired by The Miraculous Miss Maddie! Maddie is a charming and determined five-year-old who inspires other families in her community through social media by breaking barriers and showing the world all she is capable of. At 15 months of age, Maddie was diagnosed with the rare genetic disorder Angelman Syndrome (AS). Angelman syndrome is often misdiagnosed as autism, cerebral palsy, or Prader-Willi syndrome due to being similar in presentation. Individuals with Angelman Syndrome often display a happy, excitable demeanor, frequent laughter, and a fascination with water. The condition is caused by a deletion or mutation of the UBE3A gene on chromosome 15, affecting brain function and development. Maddie’s Mission was created to raise awareness about Angelman Syndrome through the support of local organizations that share the common goal of creating a world where every child has the opportunities and resources available to achieve the best of their abilities.
The partnership between Variety KC and Maddie’s Mission was inspired by her family’s personal struggle to have insurance cover a safety bed. Maddie’s family fought their health insurance company for more than 18 months before finally receiving insurance approval. This experience guided Maddie’s family’s decision to partner with Variety KC so other families would not need to endure the heartache, frustration, and financial burden of providing a safe night’s rest for their child.
Why is Variety KC X Maddie’s Mission Safety Bed Grant Program so Important to Families?
Children with disabilities often have complex medical needs which can include difficulties with mobility, seizures, or other conditions that require careful management. Standard beds aren’t designed to accommodate these needs. Here’s where specialized safety and medical beds come into play:
Safety First
One of the most important features of these beds is safety. For children who are prone to seizures or have limited mobility, there is a risk of falling out of bed, which can lead to serious injuries. Safety beds are designed with high, padded sides or even full enclosures to prevent such accidents, ensuring that children remain safe throughout the night.
Customized Comfort
Medical beds are adjustable and can be tailored to meet the specific physical requirements of a child. For instance, bed positions can help with activities like sitting up or lying down comfortably.
Ease of Care
Specialized beds often include features that make it easier for caregivers to perform tasks such as changing linens or administering medication. Adjustable heights and built-in mobility aids can reduce the physical strain on caregivers and ensure the child receives the best possible care.
The Impact of Variety KC’s x Maddie’s Mission Safety Bed Grant
Variety KC and Maddie’s Mission are dedicated to enhancing the lives of children with disabilities by providing essential equipment and resources. The funding support from Maddie’s Mission to provide safety and medical beds is a game-changer for many families. Here’s how their support makes a difference:
Alleviating Financial Burdens
Specialized safety/medical beds can be expensive, and many families may struggle to afford them. The Safety Bed Grant helps bridge this gap, ensuring children receive the necessary equipment without putting a financial strain on their families.
Supporting Families
The Safety Bed Grant not only benefits the child but also provides much-needed relief to their families. By alleviating the financial and emotional stress associated with caring for a child with a disability, families can focus more on spending quality time together and supporting their child’s overall well-being.
Raising Awareness
Through their work, Variety KC x Maddie’s Mission help raise awareness about the specific needs of children with disabilities. This advocacy is crucial in fostering a more inclusive society and encouraging further support and resources for these children.
How Can You Help?
Supporting organizations like Variety KC and Maddie’s Mission can make a significant impact. Here’s how you can contribute:
Donate
Financial contributions to Variety KC or Maddie’s Mission can help fund safety and medical beds and other essential equipment.
Spread the Word
Sharing information about the importance of specialized beds and the work of Variety KC helps raise awareness and can encourage others to get involved.
Volunteer
Consider volunteering your time or skills to help Variety KC in their mission.
Advocate
Support policies and initiatives that aim to improve access to medical equipment for children with disabilities.
