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Carlyle and her family surprised the entire staff one day by bringing an amazing (and edible) cake that was made by Charm City Cakes. Carlyle asked the artists to make a cake that looked like her leg when she was undergoing treatment. They perfected every detail, from the external fixator to the pink toe nails. "Thank you Dr. Herzenberg and Team! Love, Carlyle" was written on the platform that supported the cake. Patients and staff enjoyed every bit of the cake (even the fudge toes).
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Click here to see an article about Jack in The Washingtonian.
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I am writing on behalf of my son Nicholas. He is 5 years old and was diagnosed with Fibular Hemimelia at about 1 month old. We decided to have his leg lengthened and his ankle reconstructed at the ICLL because of their experience in treating fibular hemimelia and the confidence in the doctors that my son would live a full and active life without limitations. We understood that to most doctors amputation is the standard treatment for a case like Nicholas and for some children that may be the right choice but that was not what we felt was best for our boy. Nicholas is currently in a fixator for the second time and he is doing great. His first surgery was at 18 months old. Before his first surgery, we were very scared of what it would be like for him: would it affect his sparkling personality, would he be in constant pain? Our fears never came to pass. With both surgeries, Nicholas was off pain medication within weeks and walking and running and dancing and the same sweet, strong and happy boy he was before surgery. When Nicholas is asked about his fixator, he usually says something like this: "Dr. Standard put my fixator on to make my leg grow. He is awesome." Nicholas loves Dr. Standard, and we feel so grateful to have him treating our son. We trust him 100% with our boy and we know that he cares so very much about the lives of all the children he treats. This is a challenging process, but there is a lot of support at the Rubin Institute. I do not think there is any place like it in the world, and we could not imagine taking our son anywhere else.
 
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My Living Treasure--Dr. Shawn C. Standard
By Rachael Foote (Perthes disease, age 13)
In Baltimore City,
Dr. Standard came to town.
Full of sympathy and pity,
For all the ailing children he found.
Lucky was I,
To LIMP into his shop.
For now I can RUN,
Without having to Hop.
At the 30 mile bike ride,
We began as a pair.
Then all he saw was my backside,
And I won fair and square.
Thanks to Dr. Standard,
My hip is perfection.
So a "shout out" to Shawn
To show my affection.
Thank you, Dr. Standard! You are the best!
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Tayo was diagnosed with Perthes disease in March 2009 and had the fixator surgery with Dr. Standard in August. He is now about 9 months post-fixator. Tayho shared the most amazing thing with me tonight: today in school (5th grade) they had to write about the worst thing that has happened to them. Tayo says to me, "Guess what I wrote about?" I just looked at him. He said, "Not Perthes. It isn't the worst thing that has ever happened to me. Actually, it is one of the best things. And the fixator is one of the best things too. Think about all the friends we've met. Think about all the things I can do now that I couldn't do before."
I just looked at him and said, "Wow. That is such an amazing outlook to have Tayo," and then tried not to cry!
We never know how things like Perthes will affect our children. As hard as it is (and I know how hard that fixator can be) our children somehow seem to come through it with a perspective that is positive and that enables them to be better and stronger and more compassionate people.
Were it not for Dr. Standard and the team at RIAO, I fear that Tayo would not be in the same place that he is now, not physically or emotionally. Dr. Standard (and the fixator) has allowed Tayo to re-gain all the running and jumping and physical activities that mean so much to him. Dr. Standard and his team have also helped Tayo endure and come through this treatment with courage, strength, perseverance, and a sense of accomplishment that comes from being supported and encouraged by people who truly have your best interests at heart. We will be forever grateful to Dr. Standard and his team for the positive impact they have had on our lives.
Mary Anne and Tayo (age 10)
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