Lola’s Light: Helping Lola’s Rare disorder journey

This is my tiny superhero, Lola. In September 2020, Lola began having episodes of her right eye drooping, muscle tonality asymmetry, and physical development delay. We have had an EEG and there was no sign of seizures. We then were scheduled for a sedated MRI. Lola's results were:

T2 hyperintense signal within the bilateral cerebral periventricular and bilateral parietal deep white matter, symmetrically. Also focus of T2 hyperintensity within the left side of the splenium No associated diffusion restriction and enhancement. These likely represent a genetic syndrome.

We spent 6 hours at the pediatric neurology clinic at Masonic Children’s in Minneapolis. They ran 9 blood tests. Her CK levels and her Lactic Acid levels have come back elevated. So now we go in for genetic testing.  We don't know much at this time.  I decided to make a CaringBridge so that I could keep everyone informed and not get overwhelmed/forget anyone.  Thank you for taking the time to read.

All funds from this GoFundMe will go to Medical Expenses, Gas, and parking costs for all the appointments that Lola will need. Currently we have been referred to begin PT, OT, and Speech Therapy.  These appointments will go along with Neurology and Primary Care appointments.