Rooting for Rainey 5K
Rainey LaPrade is a 3 year old little girl who is living with and battling daily a rare neurological disorder called Sturge Weber Syndrome. There is no cure for Sturge Weber- only limited research. Our goal is to have a yearly 5k Fun Run and Walk to raise money to be sent to the Kennedy Krieger Institute- where Dr. Anne Comi is the leading researcher on Sturge Weber Syndrome. In our first year we were able to send $40,000 to Dr. Comi and her research team.
Help fund more research for sturge Weber Syndrome.
We hope that we are able to yearly contribute to the research efforts at Kennedy Krieger Institute in Baltimore, Maryland. Dr. Anne Comi was the first to discover the mutated gene that causes the malformation of blood vessels between 8-12 weeks gestation. This malformation causes Sturge Weber Syndrome.
The beginning of Rainey's Sturge Weber Journey.
Rainey was born with a significant port wine stain birthmark on the left side of her face. From the top of her lip up to the middle of her scalp. When we were consulted by the pediatrician in the hospital right after we were born he had told us about Sturge Weber Syndrome and how it was often linked to the port wine stain birthmark. That was the first we had ever heard of Sturge-Weber Syndrome.
Diagnosing Sturge Weber Syndrome
When Rainey was 4 months old she experienced over a 25 minute seizure episode that followed by a severe venous stroke. After multiple nights spent at Children's in Dallas- we finally were able to get her seizure activity under control. We were sent home with a laundry list of new medications and a complete set back for our 4 month old baby girl. She regressed on all of her major milestones up until that point. We now had a new journey that included multiple doctors and therapists visits weekly. A new normal is what we often called it.
Where we are now
Rainey is 3 years old. She is a ball of fun- and she is still making great strides every day. She goes to physical/occupational/speech therapy multiple times a week. She continues to see a list of doctors a mile long. But she is a happy happy girl. She still battles Sturge Weber Syndrome daily. And she will for the rest of her life.
Rainey is our why
We want to create a platform that Rainey can run with during her Sturge Weber journey. We hope she can educate and advocate for the Sturge Weber community.