Meet the Vanden Heuvels

Our journey with Bardet Biedl Syndrome began before Wyatt was born. Wyatt’s twenty week ultrasound showed enlarged, bright kidneys. His abnormal ultrasound led us to undergo expanded carrier screening which revealed that we are both carriers of the BBS1 gene mutation. Once Wyatt was born, genetic testing confirmed his BBS1 diagnosis. Wyatt was also born with an extra toe that he had removed last year. He currently is in Occupational therapy, Speech therapy and graduated from Physical therapy. He is currently two years old and is a very happy boy! He runs around chasing his older brother and is saying new words every week! Dinner time is a challenge because Wyatt has an increased hunger drive but we are managing and his weight is currently within normal limits. We love him very much and he is a wonderful son!

We decided to start a fundraiser because funding drives research and research drives clinical trials which lead to therapies.  Without the proper funding, therapies for BBS will not be developed. We decided that instead of just hoping someone would develop something to help our child, we wanted to try to help and make it happen. If we weren't willing to help, who would? We wanted to help our child like any parent, but we also want to help the BBS community that we are a part of.

We decided on a golf theme for our fundraiser because it seemed to be a good avenue to get people outside and together enjoying the day.  I also had been to other charity golf events before and it seemed like a good setting where people felt comfortable donating to a good cause while getting to participate in an activity. Golfers love to golf! Our son is two currently, so I picked a passion of mine and used that passion to try and make a difference. When Wyatt gets older, the type of fundraiser we do may change or we may add another based on what he likes to do.

The hardest part of starting a fundraiser is simply getting started. All the initial steps are the hardest because the directions you can go are endless.  My advice is to pick a passion of yours or your child’s and use that to help start the fundraiser. That way you enjoy what you are working on. The steps that were unexpectedly the easiest were the logistics and setting up the background operations. The Bardet Biedl Syndrome Foundation has resources to help you make a website, accept payments, pick a location, pick a name for your event, make flyers, make initial payments for venues or supplies, and the list goes on. I could not have created a successful fundraiser in the time period that I did without the Foundation's help. They have done this before and if I had a question, I asked. It was relieving knowing that I had someone in my corner who had done this before.

The hardest part about about considering to raise funds is deciding you’re going to do it, period. Once you start you will realize that every day builds on the last and your event starts to look achievable. I remember thinking, with a two year old and a four year old plus a full time job, there is no way I'm going to have time to start a fundraiser. Without the foundation's help, I probably wouldn't have. You however do have the Foundation's help and they are good at what they do. If you are interested, simply reach out to them and hear what they have to say. Remember, the end goal is to get funding to our loved ones who can benefit from research and scientific breakthroughs and when I look at my son, I know that the effort is all worth it.