Friday, November 23, 2012

Family of Rare Disease Baby 'Grateful'

Family of Rare Disease Baby 'Grateful'

A stranger who raffles his beloved race car to help a baby he's never met; A caring, intrepid team of doctors halfway around the world who could save that baby's life; And watching that wide-eyed baby giggle with his 3-year-old sister. They're the moments that make the parent of a child with a disease so rare he's just one of 14 people in the world who have it thankful. "I think life throws a lot of curveballs, and this is definitely one of them," said Jenna Buswell, the mother of 9-month-old Casen Buswell.

The past nine months have been spent taking Casen, who is only one of 14 people in the world with a rare vascular disease called glomuvenous malformations plaque type, to doctor's appointments. The disease causes Casen's breathing to be labored and his blood vessels, skin and muscles to harden, something that will only worsen as he gets older unless he receives lifesaving care in Belgium, where a husband and wife team are the only doctors in the world who have experience treating the rare disease. "Being a special education teacher, I'm used to working with high needs children. I never envisioned that was going to my life at home," Buswell said. "We're so grateful Casen is our son so we can fight for him and advocate for him."

Through the bad news at doctors' appointments, the hospital stays and medical bills, Jenna Buswell said she's been overwhelmed by the generosity and support her family has received from strangers, making this Thanksgiving, baby Casen's first, especially meaningful for the Puyallup, Wash., family. "We'll be thinking about what everyone else is doing who helped us. And what they have done for us and we look forward to the day when we can give back," she said. Buswell said she keeps a scrapbook documenting all of the acts of kindness, many on the part of complete strangers that have touched her family, in the hope that she will one day be able to teach her son about gratitude.

There was racing enthusiast Ron Cook, from nearby Arlington, who raffled his beloved 1957 Chevy Bel Air netting $11,000 for the family, who were complete strangers to him before he saw a report on ABC News' affiliate KOMO. The good deed was then carried on when the winner of the car, octogenarian Della Phillip, vowed to sell it and donate the proceeds to the Buswell family.

Then there are the doctors, including those in the United States, who have treated Casen and kept in communication with his specialists in Belgium. And the strangers, the people who heard about Casen's story and left encouraging notes for the Buswells or donated to them online. "The thing I want everyone to know is that our Thanksgiving table may be small when we're eating dinner, but it's really going to be quite large. I'll be thinking of everyone who has helped us," Buswell said. "This Thanksgiving is about living every moment to the fullest."

 Source: Yahoo News 

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