Excitement

I planned on sharing our exciting news with you last week, but life has a way of throwing curve balls when least expected. All is well now, but at the time blogging was definitely one of the furthest things from my mind. I’ll share more about what happened in the next post. For now, I think I’ve kept you all waiting for our news long enough.

So I’m just going to come out and say it. . .

WE GET TO MEET OTHER CHILDREN LIKE BRYCE!

Sleeping while we made truffles

Those who have been following us on this journey know that there aren’t many others who share Bryce’s gene mutation and even fewer who share his actual diagnosis. However, last year I found a support group on social media specifically for parents of children who have Bryce’s mutated gene. I was excited to finally find others who might know more about it and to share my knowledge with them. It has been so much fun seeing all the similarities in our children, but has also shown the wide spectrum of abilities that come with the STXBP1 gene mutation.

Anyway, there is one parent in this support group who had the brilliant idea for as many families as possible to meet at the happiest place on earth, Walt Disney World in Orlando, Florida! Those who have been there know that it costs a good bit of money, so when we first heard of this Meet and Greet we knew there was no way we could afford to go. However, after talking it over many times we realized what an incredible opportunity this would be for all of us.

*For those interested in helping the attending families pay for the Meet and Greet, you can purchase a STXBP1 t-shirt here or donate here. Please note, donations and proceeds from the shirts will benefit all families by covering the cost of the actual event.*

Thus began our journey trying to find the perfect fundraiser. We decided to try selling Spudnuts first. They were delicious when fresh. Unfortunately, they weren’t so tasty once they cooled. We realized that with just the two of us we needed something that wasn’t so time sensitive. We thought about cookie dough next. It would’ve been easy, but it seems everyone sells cookie dough and we wanted something unique. Finally we decided to make and sell truffles (you know, little chocolate covered treats with different fillings).

Our little helper!

Now a little back story. When Jus and I got married we knew we wanted to serve truffles at our reception, but they are quite expensive to buy. So we made them. We spent all our free time in his parent’s basement making a bunch of different flavors; cookie dough, peanut butter, orange, red velvet and so many more! We ended up making about four thousand truffles for our guests to enjoy. At the time we thought that was a lot and it took five years of being married before either one of us had the desire to make truffles again. Then one day Jus decided he wanted some. So we made them and shared some with a few of his coworkers. Everyone LOVED them. We even had a few tell us if we ever decided to sell them, they would buy.

For our fundraiser we decided to only make a few different types of truffles so we wouldn’t overwhelm ourselves. We narrowed it down to the most popular flavors; Oreo, Peanut Butter, Cookie Dough, Almond Joy and Assorted (using the four flavors). Once we had our flavors picked, we had to figure out how to package them. We settled for cellophane bags, tied with ribbon and a thank you card. Then we had the idea to help raise awareness for STXBP1 by applying meaning to the ribbon and card. To do this, we chose five ribbon colors. Mint Green, which represents genetic disorders. Purple for epilepsy. Green for cerebral palsy. White for scoliosis, and Silver for cortical visual impairment (all things Bryce has that are associated with the gene mutation). The card was then used to identify the type of truffle, explain the meaning of the ribbon and to say Thank You!

Don't they look yummy?

Then we began making truffles. We spent MONTHS making them, trying to earn our way to the Meet and Greet. We finally had a good system figured out so it went smoothly. Jus hated making the filling, so I did that and rolled them into little balls to freeze. I hated dipping them in chocolate, so that was Justin’s job. When he went to work each afternoon I dipped everything that remained in the freezer so there would be room for more little balls the next day.

Bryce was so patient with us during this busy time. We made sure he was always near us so he could see us and we could talk to him. He’d either hang out in the kitchen with us in his high chair, Tumble Form seat, hammock or stander (until he outgrew it). Even though he couldn’t eat any of the treats, he still did his part to help out by holding trays of dipped truffles.

Truffles invaded my fridge!

Finally, after all summer of making and delivering truffles locally and to both our home towns, we are thrilled to announce that WE MADE IT! We reached our goal and are going to meet families like ours and make some fantastic new friends from around the world at the Happiest Place on Earth!

We are so grateful to all who helped us achieve this dream for our precious son. To all who helped make, dip, package and deliver, those who gathered orders, those who came to play with Bryce while we worked on truffles, those who purchased our sweets and donated to our cause, THANK YOU!

With all of our hearts, THANK YOU! If it wasn’t for the kindness and generosity of all those around us, we would never have been able to make this dream come true.

Are you telling me I can't even TASTE one?

THANK YOU!