Village shop plans event to help infant with rare leukemia
On September 15, a Cranston shop owner in Pawtuxet Village will host a fundraiser to raise money for a West Kingston family whose only child and 6-month-old son was diagnosed with acute myeloid leukemia in June.
Amy Conn, the owner of Tag Sale Treasures located on Broad Street, heard about baby Sean Seigel through a friend of a friend. At first, she had just heard the infant was sick, but when she realized the extent of his illness, she knew she had to do something bigger to help the family. She decided to hold a fundraiser event with the Pawtuxet Village Merchants and Friends to raise money for the treatments.
The event will have face painting, a DJ, bake sale, lemonade stand, tarot readings, arts and crafts, vendors, a penny social table and more. Conn said that there would be “something for everybody.” The event will be set up as a family fun day. She said that there has been many people who have reached out to help with the fundraiser event.
“It’s amazing how much people have come out for this,” she said. “I’m really pleased with the generosity.”
They are looking to raise as much money as possible for the Seigel family, according to Conn. She said she has contacted various radio stations and news stations to help spread the word.
According to Hannah Chamberlain, Sean’s mother, he has an extremely rare form of infant leukemia. He has an FLT 3 mutation, which “makes his prognosis significantly worse.” Chamberlain said that the type of illness he has is extremely aggressive.
“When we came in he had 500,000 white blood cells. If we had not come to Hasbro that day he would have had a stroke,” she said.
Sean and his family will be going to Boston to Dana Farber Cancer Institute to have a bone marrow transplant once his chemotherapy to kill every cell is completed – a process called “conditioning”. During the conditioning, 25 percent of babies end up in the ICU since it is the strongest type of chemo. The bone marrow transplant is “his only hope to save his life”, says Chamberlain, and he will have a 15 to 20 percent survival rate if he makes it to remission for the transplant. His mother said that despite his gene mutation, it doesn’t affect the transplant.
If Sean goes into remission for the procedure, he will have a week or two of conditioning and then the transplant. After the transplant, there will be a few months of inpatient care in Boston and a year of home isolation.
During isolation, no one is allowed in the house except his parents. His mother has left her job as a manager at CVS Health to be her son’s main caregiver, and his father is in the process of becoming a real estate agent but will have to significantly cut down his hours to avoid much contact with others because of risk of exposure to germs or illnesses that could negatively affect Sean. Chamberlain said that she has set up a GoFundMe page to raise money because she will have to pay bills every month.
Currently, Sean has been on 16 types of medication, including antibiotics such as anti-fungal and anti-nausea. He gets medication such as Ativan, Benadryl and morphine as needed for pain.
Chamberlain said that out of all of the money donated to cancer research, just 4 percent goes to pediatric research. The National Pediatric Cancer Foundation also has this statistic posted on their website. She said a good organization to donate to for children with cancer is St. Baldrick’s Foundation.
For those interested in attending the event, it will be starting at 11 A.M. and ending at 3 P.M. on the 15th in Pawtuxet Village. There is a page on Facebook at bit.ly/2Mb1gS1, or you can donate to the Seigel family at www.gofundme.com/thebabyseanfund.