Celebrating Elton’s Surgery, American-Style

I’m back from a wonderful trip to Chicago, to celebrate Elton’s recovery from surgery with many of the people who helped make it happen. On Wednesday night we all met at Maggiano’s in Chicago. I had not seen Elton since December 2007, when I was in his home, and saw the enormous knee that was causing his leg to go numb. To see him sitting in a fancy restaurant in Chicago! Amazing!


Also present was the entire Castaldo clan, who are hosting Elton’s visit: Angela and Chris Castaldo; Luke, who has hemophilia; Philip; and Simeon. I have met Luke and Philip before but not Simeon, who is as every bit as handsome and well behaved as his brothers. Dr. Len Valentino not only came but hosted the entire evening. Audrey Taylor, nurse at RUSH University joined us, and Kimberly, the admin for the HTC. Also the lovely Nancy, his physical therapist, who I think has the hardest job in the world. And best of all, Neil Herson, Elton’s sponsor through our nonprofit Save One Life. Neil had provided Elton’s airfare and this evening, showered him with presents: a new soccer ball, sports clothes, new sports sneakers, a laptop! (You should have seen Elton’s eyes) Elton was already looking pretty hip with his new iPod (a gift from Dr. V) but now he was really GQ quality! Accompanying Neil was Stephanie Miller, director of marketing at ASD Healthcare, where Neil is president.

Elton has a dazzling smile and gentle demeanor that charms everyone he meets. He was so grateful for all the attention and gifts. He is now walking on crutches, feeling better and working hard at his PT.

Thanks to everyone who supported Elton, who sent money, who sent gifts. Thanks to Wyeth for the great donation of factor IX. We’ve been able to extend Elton’s visit two more weeks, to give him more time to do PT and heal. Please continue to read all about Elton at http://www.chris-tocentric.com and leave Elton a message there! He will get it, I promise!

Elton–18 years old, traveling half way across the world, never having been on a plane before, or even out of your town, trusting total strangers– you are an inspiration and a courageous young man!

Great Book I Just Re-Read
How to Win Friends and Influence People by Dale Carnegie

This is the beginning of all people skills, self improvement books, first published in 1937, and still relevant and vital. It’s a basic “how to” manage people and develop the self to be better at motivating others, getting along with others and making a difference. Very easy to read, and chock full of real life examples, from history and also just every day people, Carnegie is entertaining, motivating and stresses kindness over efficiency. His principles are truths and you can really see a difference in your relationships if you start to use them, Incidentally, I applied these in raising my children, and they work beautifully to raise respectful and polite children. You can read this in one night probably, but its impact will last a lifetime. Four stars; a classic.

March is Hemophilia Awareness Month


March is a wonderful time for promoting and educating the public about hemophilia–it’s our official month! NHF just had Washington Days, which I, yet again, could not attend! I heard it was great; at least my friends all went and had fun without me.

While googling March and hemophilia, I came across this great PSA by Newt Gingrich and sponsored by Factor Foundation of America, the nonprofit founded by my friend Dave Madeiros, who passed away five years ago, Feb. 29. Dave was a visionary, light-years ahead of his time. How different things would be if he were with us today. View this–still relevant even now.

http://noolmusic.com/google_videos/newt_gingrich_and_hemophilia_awareness_month.php

It’s a great month because our boy from Zimbabwe, Elton, had surgery on Friday in Chicago and is doing great! See photos of this child from an impoverished home, who has lost his father, 29-year-old brother to TB, and 25-year-old sister from meningitis just this past year, and who suffers from the devastating effects from untreated bleeds. He is doing great and is going to be fine. I am flying out to see him on the 25th, days before he is scheduled to go back home. There will be a lot of tears then, as everyone has fallen in love with this gracious and gentle young man.

And it’s a great month because a little 8-year-old orphan with hemophilia A in China, who is without home, parents and treatment, is having a lot of people inquire about adopting him! I have great faith he will find a home with a wonderful American hemophilia family. I am not allowed to show his photo, but he is adorable. Thin, wiry and mischevious, just as a boy should be.

Please share your activities for Hemophilia Month and please go to the blog about Elton and leave a comment! I am sure Elton would love to hear from you as an American!

http://www.chris-tocentric.com

Love: From A (America) to Z (Zimbabwe)

If you read about my travels to Zimbabwe in December 2007, you’ll remember I went to the home of Elton Sare, a 17-year-old with hemophilia who was suffering from a grotesquely swollen right knee. I met Elton’s entire family, including brother Emmanuel, age 11, who also has hemophilia. Elton lives in poverty: his father died ten years ago. His mother earns only about $27 US a month selling vegetables. His older brother Sylvester was sick with tuberculosis, quarantined in the kitchen, sleeping on the cold, hard floor.

Elton haunted me for months, and I tried to find help for him–a hospital that might offer free care. I had just about given up, until I met UN Goodwill Ambassador Juliet Hanlon, who persuaded me to keep trying, day after day. Juliet gave me renewed faith and hope. I started asking again.

When I mentioned Elton’s case to Dr. Len Valentino (chief of Pediatric Hematology and Director of the Rush Hemophilia & Thrombophilia Center at RUSH Hospital University Medical Center in Chicago) at the NHF annual meeting in November, he told me he might be able to help. Just get Elton here and we would appeal to the generosity of the RUSH community to help.

What’s happened since then is nothing short of a miracle. Elton is here now, in Chicago. He just arrived Saturday morning, after 30 hours in transit, traveling alone, with three plane changes. The gracious staff at South Africa Airways ensured he arrived safely. What courage Elton has!

You cannot imagine the challenges to get him here. When Dr. Valentino offered the surgery, Providence, as they say, started moving. We found a donor for plane tickets–Neil Herson, president of ASD Healthcare. Wyeth agreed to provide BeneFIX for the surgery. My dear friends Chris and Angela Castaldo, who have a young son with hemophilia (and two others!) opened their home to Elton for a month. A volunteer from Zimbabwe living in Chiacgo, Emma, helped meet him at the airport, to make him feel more at home. Even the UN got involved when it looked like Elton’s visa might be denied. A collection was taken through Save One Life to raise money for the passport, visa and traveling expenses–$2,900 raised in two days!

Elton comes from a country that is collapsing: there is 80% unemployment, over one million percent inflation, the world’s highest. And a raging cholera epidemic that has killed over 3,700. Food and gas are in short supply. Elton went shopping today at a mall: his eyes wide, he was overwhelmed seeing all the stores, the sites, the sounds. But not so overwhelmed that he didn’t know what to say when asked if he wanted a CD: “Usher.”

I learned through Chris that Elton’s brother Sylvester died of TB last summer. And his older sister died just in September of meningitis. Loss is common in countries like Zimbabwe. I wonder how his mother ever found the courage to let her 18-year-old son board a plane and fly half way around the world to be with strangers in a strange country.

But Elton is adjusting as only a teen can. He loves the cold weather, enjoys movies on the TV, and is warming to his host family. It must be so strange. He had his first infusion tonight for a bleed in his right elbow. Tomorrow (Monday) he has an array of tests at RUSH, and on Thursday, he gets his operation for his synovitis. We’ll keep you posted on how he is doing. You can also read Chris’s website: http://www.chris-tocentric.com for a first-hand report.

Thanks to everyone who is helping Elton! Please consider making a contribution, so that we can buy Elton new clothes, a suitcase, some CDs, and art supplies (he loves to paint in watercolor!). We want to stock him up before he heads back March 28 to Zimbabwe, where these things are not available, and where life is the greatest gift.

Go to www.SaveOneLife.net and click “Donate.” It’s that easy, and will mean so much to Elton.

(Photos: Elton’s knee, Dec. 2007; Elton and Emma at Chicago O’Hare airport on arrival; Chris Castaldo, Elton, Dr. Valentino)

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