MAX TURNED TWO LAST WEEK!! (oops, this blog post is a little late!) Max’s favorite show is Mickey Mouse Clubhouse, so, of course we did a Mickey themed party!
The day before the party, my husband, aunt, and myself pinterested…hard! We painted Mickey and Minnie pumpkins, made black pom-poms with ears, drew and painted Mickey garland with Maxwell’s name on it, and made a Mickey paper chain. It was too cute! I forgot to mention, my husband had the most tedious job of all…cutting small, white circles from labels for “Mickey’s buttons.”
I made the cupcakes from a box, and whipped up some icing to make Mickey cupcakes. I LOVE bakery cupcakes, but I procrastinated and had to DIY the night before!
This birthday was different for me as a mom. When people asked what gifts to buy for Max, I couldn’t name anything. I thought how he was going to need a gait trainer, which is anywhere from $3000-$6000. I thought about enabling devices which are anywhere from $100-$500 each. So, instead of naming a toy, I asked for a monetary donation to save for equipment he will need in the future. I will be honest, it was very hard to not see a stack of gifts ready for him to open, but it sparked the thought to do something bigger and more beneficial.
I had been designing a cute, little fox t-shirt for our family to wear, when I decided to try a t-shirt fundraiser through booster.com. I wanted to begin to give Max a voice and raise awareness for him and children like him. Even though Max cannot speak, he has a powerful story to tell, one of perseverance, happiness, love, community, and so much more. I started the Max Squad Facebook page (www.facebook.com/maxfoxsquad) to update everyone about Maxwell and FOXG1 Syndrome. I also began the fundraiser on Maxwell’s birthday as a way for people to give a gift to Max and start the conversation about FOXG1 with the rest of the world.
The first day of the fundraiser, friends and family purchased t-shirts, donated to Maxwell’s fund, and wrote the sweetest notes. We now have 15 days left in our fundraiser and I am more than humbled at your generosity, and how much you care about my sweet boy.
I have had several moments throughout this fundraiser where your kind words have brought me to tears. I kept thinking how selfless you all were, how much you wanted to help Max, and how you were concerned about his development and accomplishments. I am beyond honored and excited to have you all be a part of our Max Squad, cheering him on, and raising awareness for FOXG1 Syndrome.
Today, Max is the only child diagnosed in West Virginia with FOXG1 Syndrome. There are less than 250 children and adults diagnosed with FOXG1 in the world. It is my hope and mission to raise awareness for our cause, and ultimately help fund research that can provide a treatment for Max and kids like him. I have hope that one day I will see Max walk, he will tell me all of the things he has been thinking, and I will be able to hear the way his voice sounds when he calls me mom.