We are a 501(c)3 that funds high-quality organizations working toward research for developing cures, improving the quality of life and education for our kids and families, and working in the trenches day-to-day with therapy.
This multi-pronged approach allows us to focus both on present needs and future discoveries, and allows us to give back to organizations that we have found helpful on Willa’s journey with Rett Syndrome to date. These funds reach locally, regionally, and internationally.
Below are the organizations we are supporting with this event:
“The future looks very bright. With your help, we hope to play a part in making it so.”
Rett syndrome research trust
RSRT is aggressively committed to finding a cure. 96% of all money goes directly to research—research for gene therapy, RNA editing, MECP2 reactivation, and protein replacement, among other things.
Midwest rett Syndrome Foundation
MRSF puts on an educational conference every year, which is fantastic. They also award grants to Gillette Children’s Hospital (Willa’s clinic), University of Minnesota, and Rettsyndrome.org.
CP Center
We are lucky to have the CP Center in our community. Willa goes here for her private OT, Speech, and Swim Therapies. We have had so much love and support from her therapists here.
Willa’s Story
Willa is our youngest daughter. She was born a healthy and happy baby in August of 2015. She developed normally (apart from allergies and eczema) for the first 18 months of her life. After which, she went through a period of regression. We remember it seeming as if a fog descended upon her. She lost some of her previous skills and the ability to play with toys. It was truly terrifying to witness, and as parents, we aged decades during those months. Willa was diagnosed with regressive autism and we started all the therapies and saw all the doctors. Careers were put on hold and our lives were rearranged with the singular goal of helping her overcome this. She did really well. Willa is feisty and naturally cheerful, which makes her very capable to handle these challenges.
At three years of age, she underwent a further language regression and seizures started. She also was in a near-constant state of either hyperventilation or breath holding. She was scared and confused and sad. This led us to deeper genetic testing where we discovered that she had a mutation in her MECP2 gene—the cause of Rett Syndrome.
What does this mutation do? In Willa’s case, she creates the wrong amino acid at a certain point in her genetic code that affects the production of MECP2 protein—something needed for brain development.
When she was diagnosed, we were devastated. Rett Syndrome is a cruel disease that significantly impacts her outcome and family life long-term. It’s described as being a combination of Autism, Cerebral Palsy, Parkinson’s, Epilepsy and Anxiety Disorder. Through periods of regression, a child can lose the ability to speak, walk, eat, use one’s hands, and breathe easily. In addition, seizures and heart issues threaten their lives. There’s currently no way of predicting the course each individual will have as there are hundreds of different mutations. We don’t know what to expect or when to expect it.
The disorder is terrible, but the more we continue to read and learn about the medical advancements that are happening, the more hope and excitement we feel. This is happening quickly. We anticipate the first pharmaceutical treatments approved in the next year or two, and we are headed toward a cure in Willa’s lifetime. Rett Syndrome is uniquely positioned to be the first neurological disorder to be cured because it is linked to a single gene. Thankfully, this research isn’t being done in a vacuum. Advances in Rett play a part in further understanding so many other complex neurological disorders that are also close to our heart — disorders such as Alzheimer’s, Parkinson’s and Autism.
Thank you for taking the time to learn more about Willa. The future looks very bright. And with your help, we hope to play a part in making it so.
Love,
Krista, Rob, Evie and Willa
“Advances in Rett play a part in further understanding so many other complex neurological disorders that are also close to our heart.”
