Juwan’s Mom and I are in some of the same online Hodgkin’s Lymphoma support groups. We don’t know each other personally. But I’ve been following Juwan’s treatment and read his mom’s posts and seen videos of him in the Abington High School marching band (where he’s the lieutnant). I celebrate Juwan’s victories and I share the pain when there are setbacks. I smile with her and think of Juwan and his entire family often. As I was going through my own autologous stem cell transplant, I remembered reading his story. And he inspired me to stay as positive as I could. When it got rough, like when I had sepsis or when I couldn’t really eat or when I was feeling scared, what helped me was: my husband staying overnight, my parents visiting, the nurses and doctors who went above and beyond, my family and friends who sent notes and messages and checked in and thinking about the stories I had read. Juwan’s story was one of them.
For his 18th birthday and high school graduation, Juwan is organizing his 4th Annual Toy and Book Drive.
Because since he’s been diagnosed at the age of 13, he’s been organizing an Annual Toy And Book Drive for other children in the oncology unit at Children’s Hospital of Philadelphia to celebrate his own birthday.
“I decided to collect toys to give to the hospital, so that other children will have something to do, to stay positive,” said Juwan. (Source: 6abc)
Here’s how you can help with his drive, but please, please keep on reading to see how you can also help by registering and spreading the word about Be The Match, as Juwan’s autologous stem cell transplant failed and he’s in a need of a donor for an allo transplant.
- Amazon Wish List for the pediatric oncology department at The Children’s Hospital of Philadelphia. Please write in the gift message that it is for Team Juwan: https://bit.ly/TeamJuwanWishList
- Virtual yearbook to send your well wishes and congratulatory messages to Juwan on his graduation: https://bit.ly/TeamJuwanVirtualYearbook
- You can also donate or mail a gift card to the Kisses for Kyle Foundation (local foundation that supports the families of pediatric cancer patients) (https://kissesforkyle.org/). Thanks for including a note mentioning your gift is from Team Juwan.
Juwan has also spearheaded a campaign to register more people to Be The Match. If you text “SAVEJUWAN” to 61474 you can get a link to be on the bone marrow donor registry and help potentially save his life or someone else’s.
And his goal at the beginning was to register 1000 people, but he helped register 10000 people! (I tried to add a video here but it’s not embedding for some reason…you can see it here).
He still doesn’t have a match.
“Even if he doesn’t find a match, he’s been adamant about getting more people on the registry list,” said Andrea Adams, Juwan’s mother. (Source: The Philadelphia Tribune).
The following is from an article published in The Philadelphia Tribune who talked to Lauren Mueller, a Be The Match spokesperson:
“If you’re a white patient in need there is a 72% chance to find a person on the registry list,” says Lauren Mueller, a Be The Match spokesperson. “The likelihood of someone who is African American or Black is as low as 23 percent.”
A person’s ethnic background can make all the difference. There is an urgent need to increase the ethnic background of the donor registry, especially in the African-American community. If more Black people register and donate, more Black lives will have a greater chance of survival.
“There is a huge gap we need to fill to give all patients life-saving procedure,” Mueller said. “We need to diversify the registry. That will help all patients find a perfect match.
“If someone joins and turns out [to be a match to Juwan] that can be a cure for him,” she added. “The transplant will be a cure. That’s pretty amazing.
“We are likely to match with someone who shares a similar ethnic background,” Mueller said. “Someone who is African American is more likely to match an African American donor with a similar genetic makeup.”
Adams has a 15% chance to find a donor because of his ethnicity, Andrea Adams said.
Be The Match has announced concrete steps which might help raise the number of Black patients in need of a donor transplant to find a match (Source: Words Are Not Enough on BeTheMatch.org). Here are a few steps they are taking:
- Increasing awareness and education in the Black and African American community about the resources and potential cures available to treat Sickle Cell and other blood diseases.
- Adding a paid community engagement fellowship in the Twin Cities focused on building relationships and increasing trust with ethnically diverse communities.
- Increasing the number of interns from historically black colleges and universities by 50%.
- Committing $250,000 by the end of 2021 to partner with community and civic organizations serving diverse communities such as the National Urban League Young Professionals. (…)
Juwan’s 18th birthday is in July. So let’s continue sharing his story and his campaign to register more people to Be The Match. And let’s help him with his 4th Annual Toy and Book Drive. Let’s find ways to make him smile, like he always tries to find ways to make other people smile.
“It makes me happy when I can make someone else happy and make their day better, I don’t know what it is. I just enjoy putting smiles on people’s faces,” Adams says. (Source: 6abc)
Elodie Nowodazkij 