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Tuesday, April 30, 2013

The good that CAN come from technology...

Growing up there was no internet, or Facebook.  I knew there were other people with EB but I never "found" them until I got on the internet when I got to collage (age 19) and never meet anyone in real life until I was 21.  But thanks to the internet Sami didn't have to wait that long to find others like her:)  She knows or knows of many kids and adults who also have EB and has meet many of them in person. She knows that EB varies in severity among everyone and knows that some of her friends have a more severe form that she does.

A few weeks ago she got an assignment at school to write a 3-5 minutes speech about a person (living or dead) that had to over come some type of adversity.  Most of her classmates did it on someone who is no longer living.  She wanted to write it on someone living but had no idea who to pick.  I thought she should write about herself; after all she has overcome a lot of adversity in her short life.  But it couldn't be about herself.  So I began to think and I know a lot of people with EB who have overcome adversity in their life.  But one in particular stuck out Jamie Hartley because she and Sami have a lot of common interests.  Jamie is a singer and artist.  Sami loves to sing and draw/paint.  So we came up with a bunch of questions and I emailed Jamie asking if she would be willing to help Sami out.  Being the wonderful person she is Jamie was honored to help Sami with her speech.  Jamie got back to us within a few days and I read over her answers.  At that point the mom in me step in and edited a few things out.  Sami didn't know those with EB could get skin cancer; she is only 10 and I didn't think she was old enough to understand.  As some of you know Jamie is battle skin cancer, a battle that isn't going well.  I opted to remove part of Jamie's answer that mention cancer.  However I was very tired when I did it and apparently missed ONE line about cancer.   The next day Sami freaked out about the cancer part when she read thru the answers.  She thought it meant she would get skin cancer too.  But after much reassurance that the type she has does NOT increase her risk of skin cancer she calmed down....for about a minute... then she remembered some of her friends of EB have the same form as Jamie and wanted to know if they will get skin cancer someday.  How does a parent answer that question?  We told her there was no way to know and that not everyone with RDEB get skin cancer but many do.  Technology can be a blessing and a curse.  It can bring people together much quicker than without it but with the good is also bring the not so good. 

I was worried Sami wouldn't want to continue to write her speech on Jamie but she did.  So after many day and many rough drafts her speech was done.  It was due yesterday and when the teacher asked who wanted to go first, no one raised their hands.  But then Sami (who is VERY shy) offered to go FIRST!  So she stood up in front of her classmates and gave her speech and once she was done speaking, every single classmate asked 2-3 questions about EB!!! Because of her speech 22 more people know about EB:)  Her teacher said it went very well and Sami did a great job.  We are VERY proud of her.  

I wanted to share the speech with you all as well.  


Think  about  your  hands;  we  use  them  for  many  things  like  holding  a  pencil  to  write, or  using  a  fork  to  eat.  But for Jamie she no longer has hands like you and I do.  She suffers from a rare skin condition called EB.  Her form of EB is very severe and it has caused her fingers to fuse, or stick together and curl into a little ball making her hands look little fists.  But the loss her hands didn`t stop her from doing the things she likes to do.  Her dream since she was a little girl was to learn how to paint.  So a friend of her came over to her house and taught her how to paint.  It was difficult at first because she doesn’t have finger to hold the paint brush like you and I do.  But soon she learned creative ways to hold the paint brush.  Most days she paints hold the paint brush with her hands, elbows, her chin, nose, and sometimes even her head! 

 After much practice and many pictures she stared painting pictures for family and friends.  Then once she got really good at painting she began to sell her paintings online.  She paints all sorts of things but her most favorite thing to paint is birds.
 In addition to painting Jamie is also a beautiful singer and a talented songwriter.  Since she began singing when she was just 14 years old, she has recorded two different CD’s.  One is of Christmas Songs and she likes to sing O’ Holy night, and the other CD is of religious songs.  In the past 20 years she has traveled to over a dozen states including:  Florida, New York, Pennsylvania, Utah, Ohio, Tennessee, Missouri, Arizona, Texas, Colorado, Nevada and California to perform her beautiful songs for other people.  She has even traveled all the way over the Atlantic Ocean to the country of Belgium to sing at a fundraiser to help a child who has EB just like her. 
 Finally, Jamie also has an great interest in politics and in the summer of 2012 she was elected as a delegate at the Democratic National Convention.  She said she “wanted to be a voice for other people like me who have a severe disability, who are too sick to get out and say we need affordable health care.”  She traveled to the convention with her husband to cheer her party on and share her thoughts on health care. 
Even though Jamie has EB she doesn’t let it stop her from being a singer, song writer, political advocate and talented artist! 
by Sami 

So while some days the internet, Facebook and technology in general can cause a  lot of problems for a lot of people, this is one instance where it helped create a positive event

© 2013 Four Busy Bees and Two Butterflies


  1. I am so proud of Sami! She has grown up so fast. This was a great essay. Thank you for the reminder of positive qualities the internet has. She chose a great role model to write about too.

  2. This is beautiful Sami! You did a great job sharing about EB. Keep writing and speaking, you did a great job. Maybe someday you could join a speech club at school.

  3. Great job Sami. The EB family is soooo proud of you and all you have done. I could never speak in front of people and I am amazed you wanted to go first. So amazed at all you do. You are one amazing your lady. Love and Peace.

  4. Good job Sami! I'm so happy to hear that you are teaching others about EB! And isn't it fun to go first? You were all done and everyone else still had to take their turn! Way to go, brave girl!

  5. Great job Sami!!! We are all very proud of you and i want to thank you on behalf of Rhys for speaking out about his condition Eb. Your a winner in my eyes...Well done and keep up the hard work

  6. Sami you did an AWESOME job! I know we've never met but I am so proud of you! I have rdeb, inversa and I want to thank you for having the courage to stand in front of your class and give a speech about EB so other people can understand it better. Thanks for being such a great advocate!