Grey Chapin, the younger sister of Blair Chapin, spear-headed the Purple Lemonade Stand initiative to help raise awareness and research funds to eradicate fatal Sanfilippo Syndrome. Blair, 12, was diagnosed at age 6.
Sanfilippo syndrome is a rare neurological disorder that robs children of their cognitive abilities and motor skills over time. It affects about 1 in every 70,000 births and is diagnosed in small children. These children seldom live beyond the early teens.
Blair Chapin of Orlando was diagnosed with Sanfilippo syndrome at age 6. She is 12 now, and her father, Roger Chapin, said she requires round-the-clock attention, as well as assistance with every physical activity. While there is a potential cure for Sanfilippo syndrome — mice were cured during a study at Nationwide Children’s Hospital — the clinical trial for people will, in all likelihood, come too late for Blair.
Roger, Susan and Grey Chapin are resigned to one day having to face life without Blair. They also have resolved that they will never stop helping to seek a cure for Sanfilippo syndrome.
To that end, the Chapins started a GoFundMe campaign called Sing for Blair. It has raised more than $62,000 for Sanfilippo research in four months. Jimmy Buffett, platinum-selling artist Christina Perry, Sister Hazel and many other well-known singers have responded to the Chapins’ request for songs for Blair, who has lost her power of speech but retains her love of music.
As great as it is for Blair to hear famous singers serenade her, perhaps the best one yet came from 12-year-old Jonathan Mages. Blair and Jonathan have known one another since they were little kids together in preschool.
Jonathan has autism, and he struggles to communicate through the spoken word. However, as you can tell in his Sing for Blair version of “Let it Go,” he has no trouble at all expressing himself through song.
I wrote a story about the Sing for Blair campaign for the Health section of the TODAY Show’s website: “Sing for Blair” Campaign Helps Family Cope With Girl’s Fatal Disease.
The TODAY Health story also included words about the #SavingEliza campaign, which has raised more than $1 million to help fund the Nationwide clinical trial. Eliza O’Neill, 4, was diagnosed last year with Sanfilippo and might be a candidate for the clinical trial.
Eliza’s father, Glenn O’Neill, started the #sing2lines challenge to help invigorate the 11-month-old GoFundMe, and it attracted the attention of actor Andie MacDowell. She posted her 22-second contribution on her Facebook page, and it’s utterly charming (the Pie Song from the movie Michael — doesn’t get any better). The idea is to sing a couple of lines of a song on video, post it to social media, then challenge five other people to do the same, similar to the ALS ice bucket challenge.
For more info on the Sing for Blair campaign, check out the GoFundMe here. More of Blair’s story also can be found at The Blair Banner website. You also can help support the Chapin family’s fight against Sanfilippo syndrome by checking out Grey Chapin’s Purple Lemonade Stand initiative.
