Tuesday, May 27, 2014

A Visit from Carly

During Evan's first Spring Break, we had a very special guest stay with us. Carly, author of Tune Into Radio Carly, came to stay with us for a few days. Carly is from Australia and was traveling through the States and stopped for a visit in our neck of the woods. I met Carly online, through Ichthyosis support groups. Carly is affected with the Netherton form of Ichthyosis. We started our friendship through social media; comments on posts or pictures which led to conversations through messaging. In 2012, Carly was planning a trip to the States and was making a stop in NYC. I asked her if we would be able to meet for dinner and she kindly made time to meet me. I was lucky enough to even meet her mother as well! We had a lovely time and our friendship blossomed from there.

When Carly mentioned that she was planning another trip to the States this year, I jumped at the opportunity to offer my home to her. Fortunately she was able to fit a visit in to come see us. We had a lovely time. It was the first time she was able to meet Evan (as I did not bring him into the city to meet her a few years ago). Evan was just delighted and took to Carly instantly. Every morning when he woke up he would say "Where's Carly?" and point to the gifts she brought him from Australia.

We enjoyed our days chatting and laughing. We were able to meet up with a few ladies from the FIRST Foundation for lunch which was so great. I'm glad we were able to arrange a time to see them as I know they were anxious to meet Carly as well. Carly even tried out our MicroSilk tub while she was here. I was curious to get an adult's perspective on how effective it was on the skin and she seemed to like it. The days she was here were so enjoyable and I had such a lovely time hosting her. She pretty much got the whole New England weather experience too. One day was warm and sunny, the next cold and rainy and it even snowed a few inches on the last night she was here!  I cannot wait for another visit with her. Though it's my turn to head to the land down under!

Be sure to keep up with Carly's blog this month as she also celebrates Ichthyosis Awareness Month. Each day she is featuring a story written by someone who is affected or a parent of a child affected by Ichthyosis. Such a great way to raise awareness and learn more about this life long condition.

Carly featured our story last week you can read it HERE!!

Monday, May 12, 2014

A Day in Evan's Life 2014

Yay! It's May! Not only is May my favorite month of the year but a month we celebrate while raising awareness for Ichthyosis. A lot has been going on here, hence the reason for my lack of posts. Evan is a busy boy. He is at school for a couple of hours in the morning and after that it's Evan and Mommy time. He has me wrapped around his little finger but I don't mind. It's actually kind of cute how much he loves me! Even if he is relaxing on the the couch watching Mickey Mouse, he wants me sitting right next to him. His newest thing is "Look mama" at every little thing. Whether it's a picture in a book, something on the TV, a duplo tower he made or noticing Bruli out the window; he is in constant need of my attention and recognition. Something that will change quite a bit once his baby brother comes!

Evan will be FOUR YEARS OLD in one month. Hard to believe really. And although he is not motor like most 4 yr olds he is making his way and is still as happy as ever. I am really enjoying his speech development. We are on the verge of having actual conversations. He will say things spontaneously whether it is a comment or statement. He is quite the echo too and repeats things I say or thing he hears on the TV or iPad. Having this connection with him by communication is so rewarding to me that it makes me forget about the fact he is yet to walk, but he WILL.

For the past 3 years on April 9th, I have recorded clips of what a typical day is like for Evan. This year was no different though I did not capture nearly as much footage as the years past (I figured everyone pretty much got the idea about skin care which hasn't nor will change, for life). But at least I remembered. And today you can see Evan's growth over the past few years. Evan has always been on his own growth and developmental pattern. He has always made itty bitty steps in regards to milestones. (Also keeping in mind that he was the most premature of any other Harlequin that I know of). Many parents get wrapped up about when their child will reach these traditional milestones. And some parents with a special needs child wonder why they haven't met them or wonder when or if they ever will. I am well over that stage and Ill take anything he'll give me! It's obvious that Evan is going to do what Evan is going to do. And I am very content with that now. What is MOST important to me is that my child is happy. And boy is he one happy camper! Enjoy this year's "A Day in the Life"!

2014's Video

2013's Video

2012's Video


Thursday, May 8, 2014

Thank You! Thank You!

I am so excited to be able to send in our donations to FIRST! Thanks to all of you, we are sending 
To FIRST in honor of Ichthyosis Awareness Month!

It is quite an amazing feeling to have so many people in our lives who are so caring and gracious. I appreciate everyone supporting my boy and a foundation that will help better his further and the future of many others' lives. It's good to know that there are people who are willing to help a foundation in need. There are so many good souls out there! :-)

Now don't forget to rock out your shirt during the month of May! Take pictures and send them to me at dede583@hotmail.com or post them using the hashtag #EvansFundraiser on Facebook or Instagram. I'd love to see everyone sporting their Evan FIRST shirts! Thank you for helping to raise awareness for Ichthyosis!!

Evan's Ichthyosis Awareness Month "selfie"

Some friends at Evan's school helping to raise awareness!!!!


Thursday, May 1, 2014

It's May! Happy Ichthyosis Awareness Month (IAM)

My motivation and inspiration to help raise awareness for Ichthyosis is all because of my precious son Evan. He puts a smile on my face no matter the time of day or mood I'm in. He is an amazingly happy child for all he goes through and I am so grateful to have him in my life. I love you Evan! You are the sweetest child a mother could ever ask for! This is all for you!

It's May!! Yay!! Ichthyosis Awareness Month (IAM)! Though I try to raise awareness all year long, this month is dedicated to those living with Ichthyosis to help raise awareness and educate others. I have been very involved with helping the FIRST Foundation by using this blog to raise awareness for not only Ichthyosis but for their foundation which is dedicated to helping those affected by Ichthyosis through education, research and connecting families.

I have been spending the past few months working on a T-Shirt sale which benefits FIRST in honor of IAM. It has been very successful and I hope to send in all of the donations asap! Let's just say I am very fortunate to have so many people in my life who are also dedicated in helping FIRST in honor of my special little man! And I pretty much sold every T-shirt I ordered which is just fabulous! Check out pictures to be posted on Instagram of supporters in their shirts using the hashtag #EvansFundraiser.

I also plan on collecting change at home during the month of May. I have done this the previous two years during IAM and this year is no different. If you are interested in collecting change to donate to FIRST please do!! I know I have already had so much support with the T-Shirt sale but a little change goes a LONG way. Every penny counts! Last year I sent in a few hundred dollars just from change collected from a handful of friends!!! You can send me a check (made out to "FIRST Foundation") after you cash in your change at the end of May and I will send in all of the donations together. Even if it's $2, it's better than nothing!!! Here is more information about my past coin collections "It Make Cents to Help FIRST". And here are a few posts about why I blog and why it is beneficial to help FIRST.

And how can you kick off IAM without sharing the facts!!! For those of you who haven't read these please do. And for those of you who have, why not refresh your memory!! 

Here are some facts about Ichthyosis:

There is no cure for Ichthyosis.

Ichthyosis affects people of all ages, races and gender.

Ichthyosis is not contagious. It is caused by a genetic mutation in 1 of 40 genes that make up the skin.

- Ichthy comes from the Greek root meaning fish.

Some form of Ichthyosis affects more than 16,000 babies each year.

There are more than 28 forms/types of Ichthyosis.

Hearing and vision impairments are associated with those affected by Ichthyosis.

Ichthyosis Vulgaris is the mildest and most common form, accounting for about 95% of the cases.

Serious medical complications are associated with most forms of Ichthyosis including dehydration, infections, blistering, overheating, and rapid calorie loss.

The FIRST Foundation is the only patient advocacy organization in the country funding research for a cure.

Facts about Harlequin Ichthyosis:

Harlequin Ichthyosis (HI) is very rare and the most severe form of Ichthyosis.

HI affects maybe 1 in 1,000,000 people.

Each parent has to be a carrier of the mutated gene but show no signs of Ichthyosis.

An HI infant is born with plates of skin that crack and split apart leaving the body susceptible to life threatening infections.

At birth, the eyes and mouth are forced 'inside out' due to the tight plates of skin.

The ears of an HI infant may appear to be misshapen or missing, but are fused to the head by thick skin.

In the past, this disorder was always fatal but due to improvements in care it is now possible for an HI infant to survive.

-Stephanie Turner is the first woman affected by Harlequin Ichthyosis to give birth. Her son turns one this month!!!

The oldest person living with Harlequin Ichthyosis is 30 years old.