This past year has been a year of uncertainty, rejection, and frustration day in and day out for both Matthew’s life and his family. Hearing a constant “NO” from insurance and literally fighting with these companies is more than exhausting. Matthew was born with a rare brain disorder called subcortical band heterotopia and needs highly expensive equipment and treatments to sustain his quality of life. Believe me, if I had the choice to buy Matthew his first bicycle that he can pedal as fast as he can down the street, I would – however, there is no choosing a bike for Matthew, the reality is Matthew needs a $5,000 wheelchair, a $3,000 walker, $250 per half hour therapies, and you don’t even want to know the price of a service dog that is necessary for Matthew. As Matthew grows, expenses grow and more equipment is necessary. Despite every piece of documentation submitted to insurance from every healthcare professional that has ever worked with Matthew, insurance comes back with “he’s not disabled, we can’t cover costs.”
Though Matthew’s life may never consist of those major choices other 3 year olds have to make such as favorite flavor of ice cream or deciding between a toy firetruck or a toy car. I however, have full ability to make a choice far beyond my favorite flavor of ice cream (which is anything with caramel). I chose to bec0me active and make a difference in Matthew’s life, his family’s life, and hopefully other children’s lives with rare disorders.
My first step in making a difference was to plan a fundraiser for Matthew within my community to help offset expenses that Matthew’s family incurred and to raise awareness of rare disease. One fundraiser quickly became three very successful events! With support of all media branches (radio, TV, and newspapers) word about Matthew and the events got around town quick. I began the endeavor with much trepidation and at times even panic. At first I had no idea how to begin, what to do, or where to turn. Five months in planning, sending donation letters to local businesses for donation of raffle items, working with the media, and above all having no shame made for extremely successful fundraisers. Our local elementary school heard of Matthew and in the middle of the school year held a fundraiser, and donated the money raised at an end of the school year ceremony. Did I mention they were sixth graders!
One month later after the events, there are several more events being planned. These events are being planned by a combination of friends and perfect strangers who heard of Matthew and wanted to help. The outpouring of support from local communities is still trying to be absorbed by our family. The support has truly provided the strength to Matthew’s family and those around him to keep fighting!
There are many opportunities for fundraising in your area and beyond! Please feel free to contact me if you need insight or support should you consider a fundraiser. I learned a lot about a lot in the process and I ‘d love to share it! Also please visit www.miracle4matthew.com