Tuesday, September 30, 2014

Dear Evan

A week after Evan was born National Geographic aired the show Extraordinary Humans: Skin. The show followed two young adults living with rare skin disorders, one being Harlequin Ichthyosis. It was amazing to me that a week after Evan was born, after hearing the words "Harlequin Ichthyosis" for the first time in my life, there was an episode detailing the disorder. It documented a young woman affected, Hunter. This was the first time I had heard about Hunter and I was so intrigued to see how she lived her life in a positive light. The show answered many of our questions and we were able to see that it was possible to live a normal life with this disorder.

Hunter is a huge advocate for Ichthyosis Awareness. She recently was on the Katie Couric Show explaining this disorder and what it is like living with it. She has always been a huge motivation for us and for Evan. It wasn't until this past summer that we were able to meet Hunter. I was excited as this was the first time meeting her in person. Though I had never met her before, I felt like I had known her forever. Evan took to Hunter right away too. He seems to be aware that Hunter is just like him. We had a lovely time visiting with her and I am so glad we had the opportunity to meet in person.



I asked Hunter if she had any advice for Evan as he got older knowing she had experienced quite a lot in her life. This is what Hunter had written to Evan:


Over the course of my life thus far, I have come to a number of useful conclusions. Here is advice I have for Evan as he grows!

Dear Evan,
First things first, you are a wonderful person who possesses unbelievable love for people! Never lose it! Sometimes this world can make you forget how valuable you are. You are valuable and loved! There have been so many instances where I forgot the support that I have around me. You will always have people in your corner!
            Be prepared to advocate! A big part of being as special as you are is being able and willing to tell other people about yourself. Remember that most people have never seen a person with Harlequin Ichthyosis before. You don’t have to tell them anything, it is your choice, but I have learned from experience that being more open with people will draw people to you. If you are unafraid to speak up and be you, other people will draw on that strength. I know it is not always easy or pleasant. It takes a great deal of patience and understanding but believe me when I say it is worth it.
            Sometimes though, people won’t be so receptive of who you are. People can be cruel. There were many times that I have been singled out for being different and made to feel ashamed for it. Be aware that some people will do this. However, not everyone is like that. The majority of people you will run into will be willing to at least attempt to understand you. Whatever you do, never assume the worst in a person. There is always more to the story than what you are experiencing.
            Don’t be afraid to stand up for yourself! When you do encounter someone who treats you unkindly, don’t be afraid to stand your ground! This goes back to what I said earlier, do not let them tell you that you do not have value because of your skin. Your skin makes you uniquely you, people who ostracize you for it will never understand that. At the same time though, do not let your skin become you.
            I know that sounds strange but trust me, it can happen. When I say not to let your skin become you, I mean do not let it dictate who you are and what you choose to do. You will have to work around it sometimes, but working around it is not the same as letting it make your choices for you.
            Life is not always easy but it is always rewarding! For as much crap that happens, there will always be a light at the end of the tunnel! Do not give up! Perseverance is a trait that people admire and attempt to emulate. Not giving in will not always be easy but you will earn the respect of those around you. You deserve that respect! It is a reflection of your strength!
            You are awesome and I will always be here for you! I cannot wait to see the kind of person you grow into!

                        Your Friend,
                                    Hunter Steinitz



Here is the video of Hunter on The Katie Couric Show




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