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. Shortly after his birth in October 2020, Wyatt’s diagnosis of BBS1 was confirmed via genetic testing. BBS is a rare recessive genetic disorder presenting with a wide range of symptoms including genetic obesity that begins at a young age, progressive retinal degeneration and insatiable hunger. Other common symptoms include extra toes or fingers, learning disabilities and kidney problems. Many people with BBS progress to legal blindness by the time they are teenagers.
Each child with BBS can have very different challenges as there is a wide range of variability between severity and symptoms for each person with BBS. When we first got the news that our son had BBS we were devastated for him and his future. When expecting a child, their health and happiness are all you think about, and those days waiting for Wyatt to be born were difficult. Our son Wyatt is a happy loving little boy. Wyatt turned Three this past October and is doing well! He is always on the go. He currently goes to speech therapy and soon will be going to 3K! Wyatt is all boy and does whatever his older brother is doing. He loves to play sports including basketball, soccer, hockey and golf.
Despite all of his wonderful attributes, Wyatt has also already had some struggles he has had to overcome. Wyatt was born with an extra toe that was affecting his walking, he had his extra toe removed last year. He also does have a heightened hunger drive, making dinner time a battle that we are all tackling together. He is improving with all of it every day. His vision at this time is stable as well, but we know that can and most likely will change as he ages. Not knowing what the future holds for Wyatt is frightening, but we know as a family along with all of you we can make a difference in Wyatt’s life and for those who have this disorder living around the world. People like Wyatt didn’t do anything wrong, they simply were born with a couple letters different in their genetic code that give them a potential whole host of issues. Science however is catching up.
If choosing to participate in the Birdies for BBS golf outing or simply by donating, 100% of your proceeds will go to the Bardet Biedl family foundation. The foundation is a 501-c-3 non-profit whose goal is to improve the lives of people with BBS and to help support and fund the research needed to drive therapies for BBS forward. Therapies are being developed to help with some of the major symptoms that go along with BBS. Setmelanotide is a medication already showing promise in curbing the insatiable hunger along with reducing obesity. I also feel that with the correct funding there is a good chance that Wyatt could keep his vision through gene therapy or other therapies targeting the eyes to help stop the deterioration of the retina. Science is not there yet, but it is getting close and we can be a part of the solution. Funding drives research and research drives clinical trials which lead to therapies. Without the proper funding none of this goes anywhere. Please consider participating or donating, these are great people and this is a great cause and it should be a lot of fun!
Thank you,
Josh and Brittany Vanden Heuvel - Parents of Wyatt
If you’d like to make a donation for our raffle or if you’d like to help in any other way, please contact Josh Vanden Heuvel at 920-427-6504
June 24, 2024
201 Royal Saint Pats Dr, Wrightstown, WI 54180
8:30am Registration, 10am Shotgun Start
