Those of you who have been to Poor Fool before know that my first son, Rainer, died back in 1998. This June would be Rainer’s 12th birthday and I been thinking lately of all the good things that come in dozens: doughnuts, roses, eggs, days of Christmas, months in a year, hours on a clock. This year I am adding donations to the United Mitochondrial Disease Foundation to that list.
The Wild for a Cure race at the Cleveland Zoo has been changed this year to a walk, so we're all doing it together, minus Otty and Indy. We are asking people this year to donate $12 and then encourage 12 other people to donate $12, because there are two reasons for the foundation: to raise money and to raise awareness. When I tell people Rainer had Leigh’s Disease, they get a puzzled look and tilt their heads. Saying it’s a mitochondrial disease doesn’t clarify it. Mitochondrial problems are more common than we realize. The UMDF website says that up to 4,000 children are born every year with a mitochondrial disease but they are frequently misdiagnosed with atypical cerebral palsy, seizure disorders or diseases of aging instead of mitochondrial diseases. This means that thousands of children are not getting therapies that actually help. Although Rainer was born sick and lived only six weeks, many kids do not show signs of the disease until they are much older and sometimes not until adulthood. Please visit the website and donate $12 and send this on to 12 people and ask them to do the same. It would be great to raise $1,200 this year, but it’s even more important to spread the word:
A dozen thanks,