When I was 4 months old, I wasn’t progressing like a “typical” child. My mommy took me to the doctor and the doctor explained that my soft spots closed early, and it was important to see a neurologist immediately. Later that day I had my first CT and the doctor diagnosed me with microcephaly and explained that I was developmentally delayed, and I needed to start Physical Therapy and Speech Therapy.
My doctor told my mommy that I also needed to see an ophthalmologist because my eyes were turning in. After seeing the ophthalmologist, I had to have my eyes patched regularly to help strengthen my eyes, I also got to wear glasses that made me look even cuter. The patching and glasses didn’t work so I had my first surgery called Bi-lateral strabismus surgery which corrected my eyes from turning in.
When I turned 1 I went on my first vacation to San Diego. In the middle of the night on our first night in San Diego I woke up screaming and my body stiffened, mommy didn’t know what was wrong and googled the nearest hospital where later I would be diagnosed with a seizure disorder. After returning home to Arizona my neurologist explained that we should start testing to see if they could find a diagnosis to explain what was happening to me.
After over a year of testing and multiple negative results mommy contacted the center for rare diseases in Phoenix, after waiting many months for our chromosome sequencing to be completed I finally was diagnosed with FoxG1. FoxG1 is best explained by foxG1.org as “a mutation in the FOXG1 gene creates a severe neurological condition characterized by: seizures; major sleep disturbances; small head size; inability to control body movements; mild to significant developmental delay; lack of speech; partial or complete agenesis of the corpus callosum and inconsolable crying during the first year of life.”
Once I was diagnosed my mommy and doctors have better been able to understand where I am going to need the most help so I have been in Physical, Occupational and Speech Therapy, I have a speech device to help me communicate but I am still learning how to use it. It is unknown how long my life will be since the oldest known FoxG1 adult is 30 years old but many of my FoxG1 brothers and sisters have passed away at a young age.
I am getting very big and my mommy struggles to lift me and carry me so she needs a stair lift to get me upstairs to my bathroom and bedroom, a wheelchair accessible vehicle to help take me to appointments and a walker. Please help me have the best quality of life and consider donating to get me the necessary medical equipment I need to live the best life possible.
I chose to fundraise for Help Hope Live in part because Help Hope Live assures fiscal accountability of funds raised and tax deductibility for contributors. Contributors can be sure donations will be used to pay or reimburse medical and related expenses. To make a tax-deductible donation to my fundraising campaign, click on the Give button.
For more information, please contact Help Hope Live at 800.642.8399.
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