Donate for Delta Quinn - Leigh Syndrome
Delta Quinn Ashwin joined the world seventeen days before her due date on March 5, 2019. She was ready to meet her family and friends! Delta’s life has been full of growing, learning, laughing and making everyone who meets her smile these last two-and-a-half years. However, about a year ago, Lauren and Nick began to notice that she was experiencing unexplained motor developmental delays. After pursuing the help of several specialists and completing diagnostic testing, Delta was diagnosed with a rare genetic neurodegenerative mitochondrial disease called Leigh Syndrome that has no known cure. The disease is caused by a genetic defect and will get progressively worse with time, affecting all major organs - especially the brain and nervous system. While the average life expectancy of a child diagnosed with Leigh Syndrome is 2.5 years, recent advances in research, support, and therapy have helped many children extend the time they have to love and be loved. Delta will turn 2.5 on September 5th, 2021.
Leigh Syndrome is very rare, affecting 1 in 40,000 births. Because of its rarity, research dedicated to this specific mitochondrial disease is limited, and any therapy that Delta may qualify for likely will have very little to no insurance coverage. Funds raised for the Ashwin family will go towards (1) research to better understand the disease and hopefully find a cure, and (2) Delta's therapy and healthcare related costs or treatments to improve her overall prognosis.
We appreciate your donations, prayers, well wishes, positive vibes, and overall support as their family navigates this challenging time.
About Leigh Syndrome
Leigh syndrome is a progressive neurometabolic disorder that can cause deterioration of the central nervous system, including the brain, spinal cord, and optic nerve. It has a general onset in infancy or childhood, often after a viral infection, but can also occur in teens and adults. It is characterized on MRI by visible lesions on the brain, particularly in the midbrain and brainstem. The prognosis for Leigh syndrome is poor. Depending on the defect, individuals typically live anywhere from a few years to the mid-teens.
One estimate of the incidence of Leigh syndrome (Leigh syndrome: Clinical Features and Biochemical and DNA Abnormalities by Dr. David Thorburn, PhD of Melbourne, Australia) is one in 77,000 births or one per 40,000 births for Leigh and Leigh-like disease (a milder version of the syndrome, often not proven by imaging or autopsy). However, this may be an underestimate since mitochondrial diseases tend to be under-diagnosed and misdiagnosed.
There is no cure for Leigh syndrome. Treatments generally involve variations of vitamin and supplement therapies, often in a “cocktail” combination, and are only partially effective.