In 2008, Burlingame, Calif., mom Purvi Shah was experiencing her nine-year-old son Ameay’s second round of struggle with leukemia.
Amaey had first been diagnosed with the illness in 2005 when he was just three, but doctors said he had an 85 percent survival rate. He relapsed again in 2009 and died in September, 2011. The young boy was in treatment for six of the nine years of his life.
The Indian American graphic designer, who was announced as a Jefferson Award recipient – known as the Nobel Peace Prize for public and community service — Feb. 2, quit her job as a graphic designer to take on the role of full-time caregiver to her ailing son. As the family went through endless rounds of visits to Stanford Children’s Hospital in Palo Alto, Shah began an art and music program for Amaey and her older son, Arjun, who was emotionally struggling with his brother’s illness.
“We were living more in the hospital than not. I always had a bag packed,” Shah told India-West. At the hospital, Shah met many families whose children were also struggling with cancer. She decided to offer her art program to other sick kids and their siblings, pairing them up with local artists who guided the young creators.
Some of the first volunteer artists were from Pixar, where Shah’s husband formerly worked. Both the kids and the artists really enjoyed the workshop, she said.
Shah then decided to create an art exhibit to showcase the children’s talent, and auctioned off the pieces, raising $40,000 for the Leukemia and Lymphoma Society. “The kids were so excited to see their work exhibited,” Shah told India-West, adding that she invited doctors and nurses at the hospital with the aim of helping them see the kids “as something other than cancer patients.”
In 2009, Shah founded The Kids and Art Foundation, which hosts art workshops throughout the San Francisco Bay Area for children with cancer. The organization hosts two-hour long “destination workshops,” taking kids to fun venues such as Pixar and Google, where they work with artists to create pieces that are then auctioned at the annual gala.
Shorter workshops are conducted on a weekly basis in hospital waiting rooms, primarily at Stanford and UCSF Benioff Children’s Hospital. “Hospital waiting rooms are an anxiety zone,” said Shah, explaining that kids participate in the workshop between rounds of tests or treatments.
The organization also runs a program for children who are in hospice.
Equally important as the ailing child is his siblings, said Shah, noting that families of cancer patients tend to focus all their energy on the sick child. “Siblings are the unusually silent warriors in this whole fight. No one is thinking about them. I feel it’s really important for them to feel empowered,” she said.
Shah’s older son Arjun – now 17 and getting ready to start college in the fall – was heavily impacted when Amaey fell ill the second time. “There were so many family things we could no longer do: no more play-dates, no more impromptu events,” she said, noting that – with his compromised body – Amaey’s exposure to even seemingly-harmless pathogens could mean a prolonged hospital stay.
Arjun participated in the workshops with his brother, and when his art was displayed at the annual auction, “he felt such a sense of pride when it was bid on and sold,” said Shah.
Approximately 300 children have been impacted by the program.
Artist Rinat Goren wrote in an e-mail that she was deeply impacted by her work with Kanishka, a child who passed away shortly after he completed his piece. “It was extremely important to him to produce good art despite the fact that at the time he was so sick and obviously did not feel well.”
“He was very particular, asking so many questions, conflicting between accepting my advice and making his own decisions. It was an intense experience. He inspired me to focus on what’s important and to squeeze as much as possible from each of my art works,” said Goren.
Kiran Singh, the mother of Teghbir Singh, who has survived acute lymphoblastic leukemia, wrote in an e-mail: “We had another place we could go to – other than hospital & close friends place – and not worry about informing everyone about his low immunity. At Kids & Art everyone understood that and was considerate about it.”
“As parents, we also met many families going through treatment – we could speak heart-to-heart and exactly understood what each of us was going through. We also met families whose kids had survived and were doing great. Actually seeing those kids and families gave us hope & showed us there is light at the end of the tunnel – kids do survive and lead a normal happy life,” wrote Singh.
Shah will receive the Jefferson Award later this year at a yet-to-be-determined date. The Jefferson Awards are awarded at both the national and local level, and are based on nominations from members of the community. In San Francisco, CBS affiliate KPIX hosts the annual awards, and features a winner each week until the awards ceremony.
“It is always hard when I get an accolade. It reminds me of what I’ve lost,” Shah told India-West. “But I feel I’m moving forward with Amaey, that he is still beside me.”
Parents with children who have cancer can connect with the Foundation at kidsandart.org or on the organization’s Facebook page.