Teen Fights Chronic Illness By Founding Charity To Help Others
Jen Rubino, 17, a high school senior, has braved two dozen surgeries so far. After one, a kind act inspired her to start a charity that has mushroomed, gained celebrity endorsements and helped children in unimaginable pain.
As an 11-year-old with a chronic illness, Jen Rubino was having a dark day. She'd had her 13th surgery, and she was lying in a hospital bed, in pain. When she received a handmade greeting card saying "stay strong" from a volunteer she never met, she says it made a world of difference to know that others were pulling for her to make it--and it really did help her to stay strong.
Now 17, Rubino, of Park Ridge, a senior at Maine South High School, has founded a charity to give other seriously ill kids that sense of hope and caring she says the card meant to her.
Though Rubino struggles with chronic pain every day, she has managed, through Cards for Hospitalized Kids, to help 10,200 kids in hospitals in many states, helped by endorsements from celebrites like MTV star Lauren Conrad and actresses Lucy Hale and AnnaSophia Robb and athletes like Olympic champions Nastia Liukin and Aly Raisman.
Schools, churches, community groups, families and individuals make handmade cards, according to guidelines on the website, and Rubino distributes them to hospitals such as Lurie Children's Hospital (formerly named Children's Memorial Hospital), La Rabida Children's Hospital, Shriners Hospitals, Miami Children's Hospital, St. Jude Children's Research Hospital and the Children's Hospital of Illinois.
Below, Rubino explains what her illness is, how she still suffers from it, and what the cards have meant to seriously ill children and their families--including what one family did with the card when their daughter died.
How did you start doing this, and how did it grow?
When I first got sick I told everyone I didn’t want my suffering to be for nothing. I wanted to use it to help other people.
It started out small. I made a website and started using social media, and it started to take off. That’s when a lot of people started hearing about it and holding their own card-making events.
How did you approach celebrities and athletes to get their endorsements?
I just sent letters to them or their agents, and I was amazed at how willing they were to get involved. They send autographed pictures, and they spread the word on social media.
A lot of them have one, two or three million followers on Facebook and Twitter so just one tweet from them can help a lot. It’s just been really incredible.
Have you met any of the celebrities and athletes?
Over the summer I got to meet a bunch of the Olympic gymnasts, and some have communicated on Twitter.
Do volunteers pay for the cards themselves? Who pays to transport the cards to the hospitals?
Because we’re asking people to donate cards, I didn’t want to ask people to make cards and donate money because I felt it would be asking too much of people. So my family supports it and we have fundraising events.
We do have a lot of people who send in envelopes and stamps with their cards. That’s not required, but it helps.
How do the kids react upon receiving the cards?
It’s really amazing to see the reactions. A lot of the kids are in so much pain and facing things no one should ever have to face. It really reminds them they’re not forgotten about, and someone cares about them. It makes them so happy. It’s just incredible to see.
What feedback do you get from the kids and families?
If the kids are able to get better, the families tell us what an impact the cards had on them.
I got a letter from a young cancer patient, she’s 10, now she’s in remission and she wants to make cards. She just actually sent them in this week, which was really sweet.
Even if a child passes away from an illness, a lot of times the famiy will stay in touch with us and make cards.
One girl appreciated her card so much that her family chose to bury it with her.
What was your experience when you were in the hospital and received the card? What did it say, and did you know the person that sent it? What was your reaction?
When I received a card, I was in the intensive care unit after my 13th surgery. It was from a hospital volunteer and it was dropped off, so I never even met the person. I was going through a rough time and having a hard time with everything. The card said "stay strong," and it really helped me. I knew I wasn’t forgotten about.
Are there kids who don't have a strong support system, like their families?
A lot of these patients are hospitalized for long periods, or sometimes they have to be treated in other states. It helped them a lot by telling them someone was rooting for them to get better. So I think it has a really big impact.
What illness did you have, and what's the status of it now?
It’s definitely still a battle I deal with every day. I just try to stay strong. To help people with the struggles I faced myself definitely helps me a lot, too.
When I was 11 I started having chronic pains throughout my body. It kept getting worse and worse and the doctors discovered I had a poorly understood connective tissue disorder. My connective tissue isn’t the way it’s supporsed to be. So parts are pulling on each other. I’ve hard 24 surgeries in the last six years. Every day I deal with chronic pain. I just try to do the best I can with it and stay strong.
You've had very unique life experiences, you're very poised, and you've founded a charity which is doing great work. What do you see for youself going forward?
I think it’s definitely preparing me to help a lot of people. I’m still in high school and I’ve helped thousands of people and families with this charity.
I’d like to write a book and do public speaking about my health struggles. I feel like going forward I want to make an even greater impact and use my experiences to help even more people.
How much time do you spend on this?
I would say 14 hours a week minimum. Normally more. A lot of it is getting cards ready to go out to hospitals. And taking in cards from people who sent them in. I keep in touch with the families of the kids who receive the cards. And communicating with the publicists from the celebrities.
Is there a place people can go to make cards?
We have monthly events at Des Plaines Library where teenagers can come and make cards. They’re usually on the last Saturday of the month, and we have those listed on our website.
I'm just wondering why you don't let card-makers sign their full names and connect with individual children, so that they could correspond once a month or so.
That’s actually not a rule that I made. When I started, I put together a survey for hospitals. They all said that if the cards had last names, they wouldn’t be allowed to be given out.
They also don’t want to give out information about the children.
To find out more, make a card or organize a card-making event, visit CardsForHositalizedKids.com.