Addison Grace Bolt, born in December 2014, was 3 months old when her parents began to realize that she wasn’t developing properly. A few months later, Jonathan and Stephanie Bolt of Piedmont, South Carolina, learned their daughter was predicted to have only two years to live.
Doctors began conducting tests when Addison was 3 months old to determine why she wasn't developing normally. After an MRI, blood work and a spinal tap, she was diagnosed with a degenerative disorder known as Krabbe disease. She was 1 of 100,000 diagnosed with the rare disease, reports Fox Carolina.
Krabbe disease is an inherited degenerative disorder of the central and peripheral nervous systems, according to the National Institute of Neurological Disorders and Stroke. The uncommon disease results in severe deterioration of mental and motor skills and can cause vision loss and seizures. Unfortunately, there is no cure.
Krabbe disease most commonly affects infants but has also been known occur in adolescence or adulthood. Infantile Krabbe disease is usually fatal before the age of 2.
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As Krabbe disease will continue to weaken the infant’s muscles, inhibiting her ability to chew, swallow and breathe, according to Fox Carolina, Addison will need constant care. Jonathan and Stephanie, both working parents, cannot afford a full-time nurse, and no daycare will accept a child in their daughter’s condition.
To help pay for medical expenses and to allow Stephanie, a middle school teacher, the chance to stay home to take care of her daughter, a family friend created a crowdfunding page on GoFundMe. Currently, the campaign has raised more than $17,000.
The GoFundMe page is called “A Safe Place For Addison Grace.” A fundraising event will also be held to help the family.
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Photo credit: Fox 12 Oregon