Monday, January 27, 2014

Supporting FIRST

Tiny Superheroes already does so much good for so many special children. In celebration of their one year anniversary and their first Tiny Superhero (Brenna who has Harlequin like Evan) they made T-shirts to help raise awareness and funds for the FIRST Foundation.

This was a month long event which started in the beginning of January. So if you are interested you can purchase a T-Shirt through the end of the month and $5 of each purchase goes directly to FIRST. Robyn the creator of TS is such a gracious soul and I am so honored that she is not only in support of thousands of children in need but is also in support of a foundation that is so important to our Ichthyosis community.

The FIRST foundation is our #1 source of up-to-date information, education and research for Ichthyosis. They have a huge support system for those affected including parent groups, adult groups and young adult groups where individuals can chat via internet about tips, products, skin regimens and emotional support (especially for new parents with an affected child). Their site includes a plethora of information and it is my goal to help spread the word for this foundation so their information can be available to everyone who needs its.

Thus the goal of this blog. Yes its a hobby to pass the time and a way for me to share stories about Evan, especially to family and friends around the country and abroad. But this blog really isn't for me. And it isn't really for Evan. It's for everyone else in need of information about Ichthyosis and where to find the accurate, non bias, non opinionated essentials through FIRST, with NO STRINGS ATTACHED!!

The only thing I get out of this blog is helping others and fundraising for research. I honestly do not need anything else in my life. All I want is for FIRST to be recognized so we can help support research and ultimately find a cure. And like I have said many times before, a cure to take away the medical challenges: the struggles gaining weight, the never ending fight to stay infection free, the stress of regulating body temperature, the constant worry of keeping eyes lubricated to avoid complications and the discomfort from thick scaling and never ending skin care is what I would like to be cured. Heck check one off the list and I'd be happy.

So thank you. Thank you for reading, sharing, supporting FIRST and helping to raise awareness for Ichthyosis. Sharing this information and supporting FIRST is what is really important and is all I would ever want to achieve from writing this blog.

Here are some photos of Evan recognizing his heroes in our community.

Daddy is by far his #1 hero!

What's a superhero without his superhero sidekick Bruli!

Evan's school nurse is amazing! Not sure what we would do without her!

Evan's teacher has been so supportive and is paving the way to his education!

This lucky little guy has 2 aides trained for his care! 
They are amazing with him and you can tell he's crazy about them too!!


No comments:

Post a Comment