Who is Cori Sue?
Cornelia Suzanne Skolaski grew and developed as a normal child aside from never gaining the ability to walk without assistance. In November of 2013, Cori Sue was diagnosed with the rare disease Metachromatic Leukodystrophy (MLD). This progressive, terminal illness is deteriorating her peripheral nervous system and the white matter of her brain, severing the lines of communication between her brain and the rest of her body at an alarming rate. There is no cure for symptomatic children like Cori; and after periods of rapid progression, they typically pass away between 5 and 8 years of age.
Over the last four months, sweet Cori Sue has lost all of her gross and fine motor skills including the ability to walk with a walker, sit up, hold toys, eat by mouth and speak. She spoke her last words just a few days after Easter of this year.
What is MLD?
Metachromatic Leukodystrophy (MLD) is a rare, inherited disease. People who are affected by MLD lack an enzyme in their blood called Arylsulfatase-A, (ARSA). Without this enzyme, sulfatides are NOT broken down and instead build-up in the white matter of the brain and the rest of the body causing destruction of the myelin sheath (demyelination). Without an intact myelin sheath there is a breakdown in communication between the nerves and the brain resulting in a progressive loss of physical and cognitive skills leading to early death. There is no cure yet, but with increasing research there is hope!
Who benefits from Coripalooza?
All proceeds from CoriPalooza! will benefit the MLD Foundation and Caring for Cori Sue.
The MLD Foundation—a non-profit 501(c)(3) charity—facilitates compassion for MLD families, increases awareness of this disease that only affects 1:100,000 people, influences research to find better cures and institute newborn screening, and promotes education of the disease for caregivers and other loved ones. Without the help of the MLD Foundation’s list of medical specialists, caregiver discussion board and family conference, Cori’s family would be at a loss for her care!
Caring for Cori Sue promotes awareness for MLD and focuses on providing Cori with comfort, joy and smiles as she battles MLD. Funds raised will assist with her uninsurable medical expenses, as well as provide opportunities for her family to create wonderful memories with her during their short time together.