Thursday, March 28, 2013

My Smart Little Man

Milestones come pretty quick and naturally for most children. Many healthy babies can typically sit independently around 6 months, roll around 7 months, crawl around 8 months, eat finger foods around 10 months and walk around a year old. For parents with children with special needs these milestones are HUGE achievements. Not like they wouldn't be for every parent but it is just different. I tend to find myself in awe of the milestones Evan achieves. Milestones that don't take very long for most children to reach but the "small victories" he gains eases my mind and fills my heart with joy. And the list continues to get longer as the days go by.

I am overjoyed when I ask Evan for a hug and he reaches out for me. I am overjoyed to ask him for a kiss and he pulls my face to his. I am impressed when he finally grabs onto that toy that he struggled to hold for weeks/months but never gave up trying. I get goosebumps when he finally opens his mouth for some table food and then keeps opening it for more. My heart sings when I hear him say "Mama" and know he means it. It is such a relief that we now have a way to actually communicate (even if it's just with a few signs or a shake for no). I am in awe that this little guy never gives up trying. Wether it is trying to say a word, signing a word, putting 2 duplos together, putting puzzle pieces in their spot or self feeding, he is one determined boy.

Evan may still be working on his independent sitting skills, doesn't crawl or walk but is a very bright little guy. I know his gross motor skills will be reached in the near future but even if I was told they wouldn't, I would still never give up trying. My positive outlook for Evan's future has kept me sane and my acceptance of his condition has kept me realistic and practical. To me, it is crazy to think that some people take the little things or even big things in life for granted. We have a happy life. Wether he can sit or not, walk or not, talk or not, has hair, dry skin, or 10 fingers and 10 toes it does not matter. We are happy. I appreciate every little thing in my life and I have Evan to thank for that.

These are the types of things he does that just make my day! 
Might be boring for some but I can watch this over and over!


Tuesday, March 26, 2013

Send Me Your T-Shirt Pic

I would LOVE to make a collage with everyone sporting their Evan's FIRST Fundraiser T-shirts! I know with Facebook and Intsagram everyone is into taking pictures.. right? If you are interested please send your picture to If you are still waiting on the delivery of your shirt, I am doing my best to sneak off to the post office when I can. I appreciate all of your support and patience as I am trying to stay organized with speedy deliveries. I will be making another round of Tie-Dye shirts tonight, as I recently got more orders in. (Please email me if I have yet to send you the payment link!) Again thank you, thank you, thank you for supporting Evan and the FIRST Foundation.

Instagram: @EvanWarrior


Saturday, March 23, 2013

Page Update- Stephanie Turner's Blog

I have added a new link to the "Learn More" section of this blog. Stephanie is the author of the blog Lifeasusdotcom and is the FIRST WOMAN with Harlequin Ichthyosis to be pregnant! She is such a beautiful, bubbly, inspiring woman who is showing the world that a life threatening disorder will not get in her way of living a "normal" life. Check out her blog and read her story, as her and her husband Curt will soon be expecting their baby boy.

Stephanie also has a youtube channel where she shares videos about her life, living with HI. She has also shared her story on a few different blogs and sites. Here are the places you can read about her other than her personal blog:

-On the blog Confetti Skin, Beauty Within you can read her story HERE.

-The FIRST Foundation shared Stephanie's story on their page as well, which you can read HERE.

-Courtney, Brenna's mom, also shared Stephanie's story on her blog and you can read that HERE.

Stephanie is shining such a positive light on HI, proving that you can live the life you want even with life threatening obstacles in your way. As she grew up in a positive home and in a positive community, she participated in activities any kid growing up would. Now married and expecting a baby, she has grown up to have the life she dreamed about and is a woman who is inspiring so many.

Stephanie at her baby shower


Wednesday, March 20, 2013

Such a Charmer

Evan had a little visit today with his friend Amaya. I have the feeling that he will do just fine adjusting to all the kids at pre-school. Such a charmer and good sharer!! :-) Enjoy!!! Happy Spring!!


Monday, March 18, 2013

Ichthyosis Awareness Month: Countdown

Ichthyosis Awareness Month (IAM) is just around the corner. It is a month to raise awareness for Ichthyosis and especially for the FIRST Foundation. This foundation needs and deserves the support as they are our connection to research for a cure (not to mention all of the other amazing things they do for others affected and their families). As many of you know, last year I hosted the "It Makes Cents to Help FIRST" coin collection fundraiser. I plan on doing the same this year and everyone is welcome to participate. There are many activities, fundraisers and events going on during the month of May which others are hosting as well. The METS game is planned at the end of May; with some of the ticket proceeds to benefit FIRST. Stay tuned to hear about all of the events going on, all of which will be supporting the FIRST Foundation.

My T-Shirt Sale has been going great. I have been trying to stay organized and apologize if it is taking some time to get shirts out to everyone. I just got another order of shirts in and will be sending shirts out soon. This also means there are a few SHIRTS AVAILABLE for purchase. All order requests are recommended to send an email to Please tell me the size you are interested in and I will do my best to fulfill your request. I am happy to have been able to host this fundraiser for FIRST and to have t-shirts ready for IAM.

Some of the Tie-Dyed shirts I did for FIRST supporters!

To learn more about Ichthyosis go to They have the up to date information regaurding the many types of Ichthyosis and have resources available for those in need. The month of May is dedicated to ichthyosis awareness. It is hard to not mention FIRST in doing that. Ichthyosis and FIRST go hand-in-hand and hopefully one day FIRST will become more well known to the public. With the help of FIRST advocates like myself and other mothers, fathers, family members and friends who have nothing but an enormous appreciation for this foundation, we get closer towards a cure.

THANK YOU ALL for reading, sharing and donating. Your help and support makes it possible for FIRST to "Inspire, Educate and Connect". I appreciate all the support for Evan and for the support to help FIRST find a cure.


Tuesday, March 12, 2013

Approaching someone who looks visibly different..

I have to mention a fabulous post by Carly. Carly is the author of the blog Tune into Radio Carly and is a big appearance advocate. This post is about how a stranger should approach someone who has a visibly different appearance or disability. Carly, now an adult has encountered many different stranger interactions; some positive and some negative experiences. This post is a must read and SHARE since there are many people out there that do not know how to politely apporach someone who is "different".

As Evan is only approaching 3 yrs old we have only had a few bad interactions with the public. One being very awkward, uncomfortable and a huge invasion of privacy. I am still learning how to deal with strangers, especially the rude ones. One thing that does get VERY annoying, especially in the summer, is the assumption that Evan is sunburnt and then the disgusting "relief" the stranger feels when I say "No, he was born with a severe skin disorder." First of all, if an adult actually thought I would leave my baby out in the sun to burn (on a rotisserie spinner no less) that is nothing but pure ignorance. I don't think I have EVER seen someone with such a perfect sunburn so I find it hard to believe that others can actually think it is possible. In any case I would never be rude, stare, or ask questions before saying hello, if I was curious. Unfortunately that ignorance is out there. 

I try to stay positive and polite (for the most part) with these interactions. Most people say hello first and then ask the question. Those who start off with questions or odd looks without a polite greeting, irritate me. It is human nature to be curious but it should come with manners and respect for those in question. Now, I think it is easier for others to approach us since Evan is a baby. But I wonder what the encounters will be like when he's 8 or 15 or 25.

Like Carly said, a hello is a better way to start off. Please read her post and share it so others can become aware and learn how to be a bit more respectful when approaching someone who has a visibly different appearance or disability. Avoiding eye contact can be just as bad....

Dinner in NYC with Carly, my cousin Kara & Carly's mom Jeanette

And as humans are curious, my cousin has Alopecia. Alopecia is an autoimmune skin disease resulting in the loss of hair. Kara has been through some obstacles herself during childhood and with strangers. She definitely can relate to this post. Having a "different" appearance from the norm can make social situations difficult at times. But like most who look visibly different, she has a "thick skin" and a strong positive personality. I LOVE HER!!!!! Learn more here:


Sunday, March 3, 2013

Why I Blog

There are a few reasons why I blog but the number one reason is to raise awareness for Ichthyosis and support the FIRST Foundation. Though over time, this blog has gotten a bit more personal by adding posts that may have nothing to do with raising awareness or talking about skin challenges and triumphs. I'm glad to keep this blog more goal oriented with some few personal stories along the way. I enjoy the fact that while raising awareness, I keep in perspective on what personal information I share.

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!!!