Last fall we wrote about bone marrow registry drives fueled by love for Leni Hsiao, a now nine month-old hapa cutie (Chinese and Jewish) who was diagnosed with a rare form of leukemia. There have been several fundraising and awareness events inspired by Leni, and now one is coming to LA.
The event will feature artwork and items from these generous creators, with all proceeds going towards Leni’s medical expenses:
Alelli Tanghal, Alice Dison, Amanda Lopez, Anthony Samaniego, Aryo Toh Djojo, Bam and Lanie Barcena, Bill McMullen, Cern, Charlie Becker, Chase, Claw Money, Dallas Clayton, Daniel Racz, David Choe, Deanne Cheuk, Dez Einswell, Dorothy Hong, Dwindle, Eileen San Felipe, Faile, Gary Baseman, Geoff McFetridge, Hassan Rahim, HVW8 Gallery, Indie 184, James Jean (Hundreds), Jessica Rivas, Jordin Isip, Justin Krietemeyer, Katsuo Design, Kristofferson San Pablo, Matt Goldman, Michael C. Hsiung, Nomade, Our Open Road/Adam Harteau, Perfekt World, Rachel Pitler Hsiung, Raphael Tanghal, Rich Jacobs, Rich One (NASA Crew), Rich Tu, Ryan McGinness, Sayori Wada, Shepard Fairey, Stephen Platt, Stephen Stickler, Steven Harrington, Tamar Levine, Theme Magazine, Tim Biskup, Tobin Yelland, Tofer Chin, URNY, Vanessa Salle, Vashtie, Vicki Yeung and others. Other items are available to bid on by Adidas, Girl/Eric Koston, Han Cholo, Innovative Leisure Records, Jen Lu/Hook Ups Decks, Karlita Designs, Knotwork LA, Knowhow Shop, lovejac, The Oinkster, Maximiliano, Sony BMG, Public School, Rick Williams, Talib Kweli, Warby Parker, YogaVibe and more. Bake sale goods provided by Ticings.
In an interview with Amanda Hsiao, mom to Leni and her big sister Mae, we learn more about leukemia, Leni, and the love she’s inspired.
GR: Can you talk a bit about Leni’s initial diagnosis and what kind of support was available for you as a family dealing with leukemia?
AH: Leni’s initial diagnosis was obviously a shock to us. We are not from families that have a history of a blood cancer, or any type of cancer for that matter. We come from very different national and religious backgrounds which is thought to lessen the odds of having a genetic diseases or abnormalites, so it took a long time to accept what we were hit with. Also, the fact that her type of leukemia is extremely and incredibly rare, it made us even more shocked then we already were.
Immediate support came from our amazing friends who helped us with our other daughter Mae, and our dog Luna. Support also came from our wealth of friends who volunteered to order us dinner every night at the hospital. You cannot imagine the gratitude I have for this. Support came from friends who ran our websites, blogs, and Instagram to help us get the word out for help, support and awareness. Support came from an amazing team of doctors and nurses who initially treated her and ultimately saved her life. Support came from charities like Friends of Karen and Red Dog Foundation – just two of a bunch that immediately helped us financially. Ironically, we consider ourselves lucky in an extremely unlucky situation with what support we had as this was all happening.
GR: The art and design community quickly rallied for Leni. What did it take to make that happen?
AH: It took jeffstaple and two of his close peers, Sophia Cheng and Genevieve Becker, for putting together art auctions in both NY and LA. If jeffstaple’s design work and clothing line for Staple isn’t enough to fortify him as one of the most amazingly creative, friendly, and awesome people right now, his rolodex of peers and networks should be. Because not only does he have a network to rival the most popular girl in school, he has people in those networks that really come through when help is needed, which in my opinion is a rarity. So all these people, who represented at the Reed Space auction, are who I need to really thank. Most of these people I have never met. The humanity in all of this is unbelievable. We don’t give enough credit to the art and design community for being so full of heart and love.
GR: What can you tell us about acute myeloid leukemia and the challenges ahead for Leni?
AH: Leni has an extremely rare type of acute myeloid leukemia called acute megakaryoblastic leukemia (AMKL). The only few times her doctors have seen this is in children with Down’s Syndrome, which Leni does not have, making a rare disease even rarer. Complicating things even more are her liver issues. Before we knew exactly what was wrong with her, she had severe liver swelling, and after she was diagnosed and treated with her first round of induction chemotherapy, her liver went into what they refer to as end-stage liver failure and portal hypertension. There is a chance her liver may not work after all her chemotherapy is over. We just have to wait and see….
GR: What are the best ways to help support Leni’s fight?
AH: I would never turn down a warm casserole BUT the best and MOST important thing that everyone can do is JOIN THE BONE MARROW REGISTRY. I wish I could hire a skywriter everyday to get my point across. Basically it works like this:
We all have an “HLA typing” that we inherit from our long line of familial relationships. These HLA typings are what matches donor to recipient. For example, a sibling of a sick child has a 25% chance of matching their sibling. If that sibling is not a match, sick children have to pray that someone out there in the giant world of ours is their match. For whatever reason non-caucasians and mixed races are not represented as well as caucasians. So the odds of someone who is mixed (whether you know you are or not) is very very low.
Honestly, If i did not have a sick child I would have not even known to register. I think that transplant medicine is a fairly new science that, thanks to more famous faces like Robin Roberts from Good Morning America, is getting a little more traction in the media. I want MY community of art and designers to know that registering is so, so important. Because all the artists I know are all different colors, religions, and from such amazing backgrounds, it’s important that these people get into the registry. I promise IT WONT HURT EITHER! Here is a link on who can and how to register, and here’s the link explaining how you donate. They will do a way better job then me.
PS – I know personal journeys of bone marrow transplant recipients who refer to their donors as their ANGELS on the registry. Don’t you want to be a HERO???
PPS – COME TO THE LA AUCTION ON FEBRUARY 19!!!
GR: Leni’s been spending more time at home between chemotherapy. Is she home now?
AH: Currently she is in-patient, recovering from her third round of chemotherapy. We are waiting for her counts to go up so we can bring her home before the fourth round begins. Having her at home is nothing short of heaven and, if anything, this experience has made me never take anything I have for granted ever again. Hug your healthy children.Take them on vacation, or just to the playground! Never take any of it for granted. I hope someday, in my lifetime, all cancer is wiped off this earth for both children and adults.