Off to Africa…again!
Laurie Kelley
April 15, 2009
I am currently traveling to Kenya. Please check back in the next few days for regular updates from Africa.
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Maybe Madonna Had it Right
Laurie Kelley
April 6, 2009
Such hullaballoo when Madonna tries to adopt a second child from Malawai. Some of the news articles got nasty and personal about this. (Never heard a peep when Brangelina adopted again, and again, and again…)
Well, I’m happy to report that the little boy from China with hemophilia, living in an orphangae with no factor, has an adoption underway! We were able to find him a family in about a week, using our connections in the community. So, maybe we can do it again?
Here are two children looking for homes:
From Holt International:
“This sweet boy, born January 7, 2001, is described as playful, social, and always having a smile on his face. He has a wheat complexion with big, dark, expressive eyes. He attends an informal school and knows his body parts, numbers up to 20, days of the week and months of the year. He reportedly likes to color and put together puzzles. He understands simple instructions given in English. It’s noted that he can write his name and copy a few letters in both English and his native language, but doesn’t recognize it. He helps the staff and his peers whenever needed. This little guy has hemophilia, also known as factor VIII deficiency. He is very compliant with precautions needed to protect himself such as wearing knee and elbow pads and taking his medication. This charming boy needs a forever family who has parented past his age and has access to the resources he needs.
“To adopt this child, there must be no more than 45 years age difference between older parent and child, and there is a maximum of 85 years difference between combined age of parents and child. Single applicants are accepted on a case-by-case basis. Up to 4 children in the home* See country criteria for complete requirements.
http://www.holtintl.org/cgi/photolisting/3.cgi
ID: B08-50
And from Partners for Adoption:
“Alina” is a lovely 10 year old girl who is warm and friendly, and extremely outgoing. She also has hemophilia, and as such, requires parents who are able to help her manage this condition. She is in Eastern Europe and waits eagerly for her forever family. For more information about how to adopt her please contact Partners for Adoption, jen@partnersforadoption.org, 925-946-9658. http://www.partnersforadoption.org/waiting_children.shtml
If you know a family that is looking to adopt a child with hemophilia (and about 10 contacted us), please contact the adoption agencies above directly. Maybe you’ll have more success than Madonna did this week.
Weird Book I Just Read
The Politics of Stupid by Susan Powter
Susan Powter–you know, the shaved-head, frantic fitness lady who practically invented the infomercial in the 1980s. I happen to like her style, and so picked up her book on diet and health. Why am I not surprised. It’s actually not a bad message: she has excellent things to say about how we are mislead by the media about diet and exercise; about how we need to get moving and eat better food, but mostly get moving; and how being age 50 can actually be the best time of your life. Great message; entertaining messenger. The book is hardly a book; it truly reads like someone transcribed one of her one hour infomercials and made a book out of it. It’s okay if you want an entertaining and pretty raucous pep talk and motivation. But don’t expect too much information. The facts are thin; the rhetoric laid on like slabs of butter. One star.
Celebrating Elton’s Surgery, American-Style
Laurie Kelley
March 30, 2009
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.
Wanted: A Few Good Inhibitor Patients
Laurie Kelley
March 23, 2009
I just returned from Miami, where I attended the first 2009 Consumer Advisory Council with Novo Nordisk. This is our fourth year, and it just keeps getting better! I spent all day Thursday, from 8 am till 4 pm, with about 12 inhibitor patients and family members, along with representatives from Novo Nordisk. The Consumer Advisory Council covers topics of direct interest to inhibitor patients and family members, and offers them a chance to give feedback directly to Novo Nordisk. The Council meetings allow Novo Nordisk to share product and treatment information, solicit suggestions and brainstorm together on meeting the needs of the inhibitor community.
It’s vital for consumers to have a direct line to the manufacturers; in this way they are able to express their concerns, needs and hopes. And it’s more than just lip-service. What has been presented in the past through the Consumer Council has become a reality in some programs and educational brochures for patients.
For instance, the Uninhibited Achievement Awards (UAA) were created through the Consumer Council and honor individuals in the inhibitor community. In addition to an award, a donation is made to the winner’s favorite charity.
So, we are looking for a few good inhibitor patients!
By August we want to nominate a patient with an inhibitor who meets the criteria of the UAA awards. Know someone with an inhibitor who is courageous, hard working, and achievement-oriented despite so many medical obstacles? Go to http://www.changingpossibilities-us.com/changing/index.asp and fill out an application! It’s easy, and will be well deserved.
Also, in 2010 we will need new members for the Consumer Advisory Council. If you know someone who might be interested in participating, contact and let us know. Council members must be a person with an active inhibitor or their caretaker (parent). It’s a chance to travel, work as a team, consult with a pharmaceutical company, and get your voice heard.
Good Book I Just Read
The Greatest Salesman in the World by Og Mandino
This little gem is considered a classic in the field of motivation and business. First published in 1964, it may read a little dated but its principles are timeless. The entire book is a parable, and the business principles of selling are presented as ancient, secret scrolls. Hafid is a wealthy, elderly man, living in Damascus, Syria, at the time of Christ. He is known as the greatest salesman in the world. As he nears death, he decides to liquidate everything he owns–millions. He has Erasmus, his faithful servant, sell off everything except for some money to see him through to his death. But he shares with him a secret, which he says is worth more than the jewels, money, millions he has made. Ancient scrolls, passed on to him from the previous greatest salesman, have been waiting to be revealed to the next greatest salesman. Hafid shares the scrolls with Erasmus, warning him they must give these ancient scrolls only to someone exceptional, someone seeking to be the greatest salesman in the world, even if he did not at first know it. How would they know who it is? Some sign would alert them.
At only 100 pages, this little book can be read in a few hours, and is packed with wisdom (even though I found the writing to be a bit stilted and inconsistent, as Mandino tries to write in a “verily” and “this is howeth they used to speaketh” kind of way). The book has distinct Christian overtones, which may be off-putting to non-Christians. The wisdom in the scrolls, and how Mandino (or Hafiz) says to use them, is excellent, and I can attest, as do so many others, they do work. Three stars.
