Welcome to the TEAM BELLA campaign for STXBP1 DISORDERS. Unfortunately, for those affected by STXBP1 disorders like Bella, there is no cure and we need your help and support! All proceeds/donations go directly to The STXBP1 Foundation for research and helping families affected by STXBP1.

A little Info on What STXBP1 Disorder is & how it affects those who have it:

The STXBP1 gene is located on chromosome 9 and it plays a vital role in the brain cells ability to communicate with each other. A disruption or the absence of this gene results in abnormal brain function leading to seizures, development delay, movement disorders, learning difficulties, behavior problems, etc. In most situations this DNA malfunction of the stxbp1 gene occurs randomly (de novo). There are approximately 1500 people affected by Stxbp1 Disorder worldwide. Although, it is believed that more are out there who have yet to be genetically tested

How STXBP1 has affected BELLA:

Bella started seizing at 4 days old and was hospitalized for the first 4 weeks of her life. Thankfully her seizures became under control during that initial hospital stay and we had been seizure free until April of 2022. Bella received her STXBP1 diagnosis when she was 2 months old, her STXBP1 gene is missing a portion of the gene itself affecting its ability to produce a vital protein needed for brain cells communication. That was when we found out what we could be facing even though there wasn't much information out there go on at that time. Bella did miss every one of her milestones. She sat up at 1 yr, crawled and starting chewing foods at 2 yrs, pulled to stand at 3 yrs, walked at 4 years old! She is vocal and can say hi, hey, and hello and definitely has lots to say and knows exactly what she wants and will definitely figure out a way to tell you. She does know how to sign Yes, More, Hi, and Bye. She is one determined little girl who will no doubt excel in anything she puts her mind too.

We would like to Thank you for your support of our daughter's disorder. All proceeds go to The STXBP1 Foundation (nonprofit organization).