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ORLANDO, Fla., Dec. 16, 2015 /PRNewswire/ — Blair Chapin, a thirteen-year-old little girl is dying. Diagnosed with Sanfilippo Syndrome at the age of 6, Blair has slowly been dragged down by a disease whose life expectancy is in the teens. Blair no longer speaks, cannot feed her self and has lost her ability to walk without assistance.
Her father, Roger Chapin of Orlando, has taken to social media with a campaign to “Sing for Blair, Fund a Cure,” in an effort to raise awareness and research dollars in hopes to save the lives of other children with this dreadful disease.
The idea for a campaign started when he originally posted a video of himself singing John Denver’s “Annie’s Song” to Blair, something he routinely does to comfort her at bedtime. Blair loves music.
“At first, I did it just for Blair,” said Chapin. “Then I got so many ‘likes’, ‘shares’ and positive comments, I thought about a fundraising effort around the idea of ‘singing for Blair’ to help fund a cure.”
Along the way, an interesting thing occurred, the campaign got a boost by some of the biggest names in music. Since then, Sing for Blair has raised nearly $80,000 towards the $100,000 goal for research.
“Hi, Blair!” announces Jimmy Buffett as he prepares to perform “That’s What Living is to Me” in a video dedication for the campaign. “I heard through some friends that you’re a big fan… and I heard you have a favorite song, and one of yours happens to be one of mine.”
Then Blair got the opportunity to meet Grammy award winner Emmylou Harris before a recent concert. Harris took time out of her sound check and pulled up a chair to Blair and sang “Big Black Dog.” (Blair also owns a big black dog, a standard poodle named Henri.)
Davis Gaines, the Broadway actor with over 2,000 Phantom of the Opera performances stole Blair’s heart with an in-person rendition of “Somewhere Out There.”
In addition to Buffett, Harris and Gaines, other musicians and bands have serenaded Blair, including:
Christina Perri who dedicated “A Thousand Years” in a performance;
Keith Harkin of Celtic Thunder fame, preformed an original, “Risk the Fall”;
American Idol finalist Emily Piriz;
Singer-songwriter Ari Hest;
The band,Before You Exit came to Blair’s home for a personal performance of “Heart Like California”;
Platinum recording artists Sister Hazel provided a personal video dedication of “All for You”; and
Neon Trees dedicated “Everybody Talks” to Blair at an Orlando stop.
Friends, family and complete strangers have dedicated performances to Blair on social media. And with every song, comes more awareness and fundraising towards a cure for Sanfilippo Syndrome.
Chapin’s hope is to bring attention to the disease which is considered an “orphan disease” due to its rarity, lack of public understanding and absence of significant research dollars.
“If I can convince others to watch the videos, donate, share or like, I’m hoping someone with a stronger voice than mine will bring greater attention to our efforts,” said Chapin. “I know it’s likely too late for Blair, but not for others.”
Sanfilippo Syndrome is caused by a defect in a single cell. It is an inherited disease of metabolism that means the body cannot properly break down long chains of sugar molecules called mucopolysaccharides. Sanfilippo syndrome belongs to a group of diseases called mucopolysaccharidoses (MPS). Specifically, it is known as MPS III.
The campaign will reveal its latest dedication to Blair on her 14th birthday. Singer, actor and composer, Michael Andrew performed “Have Yourself a Merry Little Christmas” in-person to Blair earlier this week. That performance can be seen on at www.SingforBlair.com on December 21st.
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