If you have been following us for awhile, you know that we focus on three main goals. Awareness for Rett Syndrome, fundraising for Rett Syndrome organizations, and living life as best we can. When Covid hit, our focus shifted. Those Continue Reading
Moving Forward
Work in the entertainment industry had all but completely halted and the particular segment of the business I was in was going to be slow to return. Zoom school was not working for either kid. In person school was going to feel too risky. So, with no education plans, no employment plans, and no social plans, we did the only thing that felt safe at the time. We bought an RV.
The journey of our documentary
In 2019 we released our trailer for our documentary with the intention that 2020 would be the year we would share it. Little did we know how hard that would end up being. We were having a very exciting 2019 Continue Reading
Reliving
Trying to disassociate from our own lives in order to craft a story as a filmmaker was difficult. Explaining how it feels to get a Rett Syndrome diagnosis, explain what Rett Syndrome is and the enormity of living with it, that was hard. Reliving life with Magnolia, I’ll cherish every moment of it.
Through the month of December the documentary is available to rent at www.magnoliashopedoc.com.
Watch Magnolia’s Hope for #GivingTuesday
As originally seen on Today.com – The film is available today at https://watch.showandtell.film/watch/magnoliashope Rett Syndrome: Don’t Google It. “Your daughter, Magnolia has Rett Syndrome.” The developmental pediatrician leaned in apologetically and added, “don’t Google it.” As the air left the Continue Reading
This is 10
Today is Magnolia’s birthday. 10 years old! She is in so many ways everything I would hope my 10 year old would become. She is wise, and smart, and defiant, and demanding. She is strong and sweet and funny. She Continue Reading
How do Rett Symptoms really impact our daughter?
I recognize that without living through the myriad of symptoms that Rett causes, it’s hard to really picture what these symptoms are like. Not being able to use your hands, for example, does not seem as horribly disabling as it is. Continue Reading
Spinning out of control
A very common statement said to me is, “I don’t know how you do it”. I usually don’t know how to respond other than smile and change the subject. Truth is, there are days that life is spinning out of Continue Reading
Diagnosis: uncertainty
We have all known life is uncertain, but 2020 has really handed us uncertainty on a silver platter. If anything Covid has given the world a glimpse into our lives. The entire world is contemplating medical uncertainty, a range of Continue Reading
What would you ask for?
We have been told numerous times, “We are so close to a cure.We are so close to treatment for Rett.” We have had so much hope for a cure, but even a treatment, something to abate one of her symptoms Continue Reading
