So why do I blog? Here are a few reasons.
RAISING AWARENESS- Once Evan was born I did not share his story with anyone other than a friend or family member. Not because I was embarrassed or uncomfortable about his condition and with the way he looked at birth but for his ultimate protection. Not to mention that I did not have ANY time other than caring for my high needs infant. Believe it or not, 3 years ago there was less information about HI than there is now. The majority of information available, that was accurate, was provided by the FIRST Foundation. Having the experts there for Evan allowed them to update information about treatments at birth in medical journals and in the dermatology community. The first year of Evan's life was very busy. Between lots of therapy sessions, never ending doctor appointments and learning how to manage Evan's skin; there wasn't really time for anything else. Now that I have become comfortable with his skin management and daily routines, I have time to blog and host fundraisers for FIRST.
I believe that raising awareness is important for many reasons. Most importantly for my community. I want Evan to feel comfortable growing up because he deserves a "stress free" life. He shouldn't ever have to worry about what other people think of him or other kids in school. We plan on raising him to have a "thick" skin, to be confident and positive about life. But I want to know that while out and about in town, we are connected with our neighbors because they are aware of Ichthyosis. I want the community to feel comfortable and educated as well. I do not mind sharing and answering questions about HI so that everyone feels comfortable.
Raising awareness helps HI become more known to the public. By having those aware, sharing and spreading the word creates more of an understanding of Ichthyosis. And a better understanding leads to opportunities to help find better treatments and one day a cure. Besides personally educating the public, awareness provides a pathway to the foundations who really help those in need. It can help promote more funding for research to find a cure and provide help for others affected.
THE FIRST FOUNDATION- What an amazing amazing foundation. As Ichthyosis and FIRST go hand-in-hand so does awareness. The FIRST Foundation's mission is to "Educate, Connect and Inspire". We were so incredibly lucky to have had the experts from the very beginning. Others are not so lucky and need this type of foundation to help educate and connect them with other families in similar situations. I know that once Evan was born, many of our family members contacted FIRST immediately to gain more information for themselves and to become members. Not only does FIRST connect families but they also connect medical professionals so the accurate treatments can be discussed, especially in the event of a Harlequin birth or Collodian baby.
The FIRST Foundation also helps fund research for a cure. A cure to take away all the medical complications associated with HI is all I could ever hope for. If scaling, infections, crazy metabolism and overheating didn't exist, it would make my life much less stressful! I am happy to promote and advocate for this foundation because it is there, where the opportunity for medical advances will truly be made. It is with our support and the support from others who can really help this foundation take a step closer to a cure.
KEEPING BUSY- This blog has been a nice hobby especially since it is hard to find time for a hobby these days. My biggest hobby was sewing which I don't do much of anymore. It is something that I have to do from start to finish in one sitting or I loose interest. Blogging has been enjoyable and a great way to raise awareness and promote fundraisers. It is something I can work on for 10-15 minutes while Evan is content or napping and then go back to, to work on at another time. The two fundraisers I have hosted in the past year have been very enjoyable and highly successful! (BTW the T-Shirt sale is going great!)
It's a great feeling to blog and fundraise especially since I am eager to help the Ichthyosis community. I am so glad we have a foundation for our support. They have done nothing but help others so it is an honor to help as well.
Evan sporting his FIRST Fundraiser shirt!!
Still available!! Email me!!!
YOU GO GIRL!!!! After all, you are an educator by trade, you just expected to teach children but now you teach adults. The more our community knows about this condition the easier it will be for E.
ReplyDeleteJust randomly came across your blog and I just wanted to tell you I think you son is just beautiful! I can see the joy and genuine love of life in his eyes. I also have a rare disease and find it so important to raise awareness - I was saved by blogs and online forums - so sharing your experience is sure to help someone somewhere, even if it is just encouragement or support that they are not alone. I hope as your son grows older that he will not be too bothered by the ignorance of others. You are a wonderful Mom and I'm inspired by your commitment to you son!
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