T-Shirt Sale: Design Sneak Peek

I designed the T-Shirt for this fundraiser and was not happy with my artwork. Luckily we have an amazing artist in the family and she offered to re-do my design. She does fabulous work and has recently been doing illustrations for children's books. Check out her work here. I was so relieved knowing that the design would come out looking fantastic since she was doing it. And I was right!!!! Here is what the shirts will basically look like. (And you're lucky Im showing it because I don't think she is officially done with it yet!!!)

On front left corner...

On back of shirt..

Shirts will be sent out for printing VERY, VERY, SOON. If you are interested in purchasing a shirt please email me (dede583@hotmail.com). Please let me know what size and quantity you are interested in. This will guarantee you receiving a shirt! All other shirts will be on a first come, first serve basis. I will keep you informed of the details and whether I will be able to offer children's sizes too. Thank you so much for your support and for supporting the FIRST Foundation. 

Additional information available HERE and HERE.

 

Almost a Month Away from Rare Disease Day

I created this blog almost one year ago, in preparation for Rare Disease Day. Last year I wrote a post about caring for my baby with Harlequin Ichthyosis, to begin to raise awareness in honor of RDD. Rare Disease Day (RDD) is a world-wide event celebrated on the last day of February, to recognize  rare diseases in order to help raise awareness and hope for the future. With hopes that more recognition will come the opportunity for better medical research, treatments and cures. This year’s motto is “Rare disorders without borders”. Yesterday, a friend of mine, who is the author of an amazing blog, was a guest poster on Blessed By Brenna. Carly wrote about her life living with a rare disease, Ichthyosis form Erythroderma/Netherton's Syndrome. She is an incredibly positive woman and has written about her successful life, leaving the message that when Evan grows up he “will be OK’.

Having a positive outlook on life while living with or caring for someone with a rare disease is the best way to live. Having hope for the future and knowing that living a happy life is what is most important. Of course there are days where I’m sure many hit a bump in the road or times might not be completely happy. But those bumps make us stronger and we move forward trying to live without fear or negativity, as best we can.

Having Evan has opened my eyes completely. I live a totally different life now than I did before he was born. In many ways, obviously with the care involved but my outlook on life has changed dramatically. Now, I feel I live a more positive lifestyle. I do not take things for granted, I appreciate the little things, I avoid judging others and feel much stronger as an individual, mother, wife, and friend. I am happy and Evan is happy. Though with this positive outlook on life doesn’t mean I do not have hope for a cure. Because all I could possibly want other than what I already have, is a cure for my boy.

By raising awareness for Rare Diseases, Ichthyosis in particular, is a way to educate others. Educating others is extremely important as it can help avoid misconceptions about those who appear to be ‘different’. “Hope is in our Genes” and you can help raise awareness if you “Wear that you Care- Rare Disease Day 2013”. A friend of mine in the Ichthyosis community has created the event, “Wear that you Care- Rare Disease Day 2013”on Facebook, in hopes to raise awareness and to promote Rare Disease Day and the Global Genes Project. On February 28th wear your "Jeans for Genes" and help raise awareness for rare diseases. Laurie is collecting donations for the FIRST Foundation in honor of this event. I have already made my donation and plan to break out the denim on February 28th! You should too! :-)

 

Why Help FIRST?

This blog was created with a mission to raise awareness for Ichthyosis and to help support the FIRST Foundation.  It is my goal to help the FIRST Foundation gain 'publicity' and to help raise donations to fulfill their mission.


The education about Ichthyosis and its treatments are incredibly necessary for the survival of many (Ichthyosis) babies born, especially those affected with Harlequin Ichthyosis. Time is of the essence, as another Ichthy mom wrote in her blog, Confetti Skin, Beauty Within. For medical professionals that know little or nothing about Ichthyosis, it could be life threatening. Not knowing exactly what to do in the event of a HI birth could cost a baby its life. Even the slightest touch of the human hand, whether a doctor's or mother's, could be deadly, as bacteria could easily cause a deadly infection.

Unfortunately, many times there are no warning signs or a pre-diagnosis that an unborn child is affected, unless the parent (or parents) are affected. The births of children affected are usually surprises which makes the situation that much more intense and critical. I know there are many things that can occur with the birth of a child which may be a 'surprise' but if more awareness is brought to Ichthyosis and if FIRST gains more attention from the public and media, it will be possible to educate more people including doctors.

If every doctor, who was unfamiliar with Ichthyosis, knew they could contact the FIRST Foundation in the event of a patient being affected, it could help dramatically. Having the correct information and treatments for a Collodion baby or Harlequin fetus could result in many successful outcomes. I have heard too many stories where an affected baby had been born and the doctors not only gave a misdiagnosis but also told the parent(s) that their child would not survive. If the doctor doesn't think the baby will survive does that mean they give up trying to save its life?

Not only does the FIRST Foundation provide the information medical professionals may need but they connect them with doctors who are experts in the field who can guide them with the proper care instructions. The FIRST Foundation also connects families so they can share stories, ideas, information, treatments and to have that support from someone who really understands what each other is going through.

The FIRST Foundation helps fund research for a cure. There are many different types of Ichthyosis which range in severity and the FIRST Foundation provides funds to help with many different studies being conducted. Not only are they looking for a cure but they are looking for better treatments for those who are affected.

So why help FIRST? I don't see any reason not to. My family was very fortunate to have had the experts there from the moment of Evan's birth. Not only the moment of but the days before when they gave us a diagnosis of Harlequin Ichthyosis before Evan was born. Not only are other doctors in many of our states in need of this type of information but doctors in other countries, where their medical care is not nearly as advanced as ours, are in need as well. The best way to get this information out is to share it. Help raise awareness and help promote the FIRST Foundation so every affected child can be  given the appropriate care and have the opportunity to live, like my young warrior.


   

T-Shirt Sale

Evan's FIRST Fundraiser 2013

To kick off the New Year I have finally made plans for a t-shirt sale. I wanted to have the t-shirt sale ready to go in November and time got the best of me.  All profits from this fundraiser will benefit the FIRST Foundation in Evan's name. I thought it would be nice to have shirts sold and sent out with plenty of time before Ichthyosis Awareness Month.

The design of the shirt is pretty much done with only a few edits left to be made. I plan to begin printing this month and will keep everyone updated. If you are interested in a shirt PLEASE email me, dede583@hotmail.com with the subject field titled "T-Shirt Sale", so I can get an idea of how many to order. Payment is not required until shirts are printed and officially "ordered". I will have a paypal account accessible for easier purchase. I am estimating that shirts will cost between $15-20, again all profits to benefit the FIRST Foundation. If this changes I will let you all know but I do not expect them to be more than $20. UNLESS you want your shirt custom tie-dyed, which I am estimating will cost an extra $10.

I appreciate all of your support for this amazing foundation. After an amazing start to the New Year and  not only being part of but a recipient of a very generous fundraiser, I feel inspired to give back and do some good for our Ichthyosis community. And what better way to do it than to have shirts ready to be worn for Ichthyosis Awareness Month.

Since the design is not yet complete I do not have a picture right now. But I can tell you that it is custom designed and I am using my favorite quote on the back, "Sometimes we live no particular way but our own." I will post pics of the completed shirts when they are ready for sale!

Again, If you are interested in purchasing a shirt when they are available, please email me (dede583@hotmail.com) so I can have an idea of how many shirts to make and what size(s) you are interested in. Thank You!!!!


 

Another Amazing Possum Day

New Years day is full of fun and laughter with some of the most generous people I have ever met. The Possum Queen event is a local fundraiser full of funny skits, live and silent auctions and teams who 'bribe' everyone for donations. Last year I posted about this amazing event and here we are again. My community is filled with some of the most selfless people I know. So many generous souls who came out to 'party' while helping out local families, Evan being one of the recipients.

I am speechless over the thought that we have been included again as a beneficiary. Evan and I both have been feeling under the weather the past few days but there was no way we would miss it. Luckily, this boy is a trooper and had a smile on his face the whole time. We enjoyed watching multiple skits, performed by the teams, which were highly entertaining. Evan particularly liked the life size Possum that was walking around and couldn't take his eyes off of him. Fortunately we were able to stay for most of the event but had to slip out right before the end of the live auction and crowning of the Possum Queen. I'm a little bummed I missed that part but hopefully Ill find a youtube video somewhere so I can watch it.

Thank you, thank you, thank you to everyone who helped, participated, donated and attended Possum Queen this year. We are so lucky and blessed to be living in such an amazing community.

 

Educating the Trolls..

Friday night I couldn't sleep after seeing a picture of a Harlequin baby being misused for attention on Facebook. Reading the comments made me nauseous especially since there was no information given about the baby as to what it was or how someone could really help. The only words connected to the picture were 1 LIKE = Get well soon. Seriously people? Do you really think that liking the picture is going to help the baby get well? Obviously not, just like all the other FB junk chain pictures saying LIKE if you respect, Ignore if you have no soul blahh blahh. It's disgusting what people will do for attention and I wasn't about to sit there and let all of the ignorant people continue to say horrible things about an innocent baby whose photo was stolen.

My immediate reaction was to comment on that photo to try and educate the commenters and trolls. Incredibly unsuccessful. As I commented with what the diagnosis was and added a FIRST link, I noticed it was useless because at least 30 new comments were coming in at the same time. Many people were commenting that it was baby Brenna and referred people to her site. Fortunately, I knew it wasn't Brenna since I had seen this picture when Evan was born. I fell asleep aggravated as the comments accumulated over 10,000 and the likes were reaching 500,000. There was obviously too many people wrapped up in this viral photo and impossible to educate them when thousands of comments were being posted as the minutes passed.

I woke up early Saturday morning eager to try and educate others about HI, especially the ignorant trolls. I decided to make a picture collage of Evan with information on what the condition was and where to go if people really wanted to help. This is what I came up with. (Please excuse my errors. I was fired up and didn't check spelling)

click to enlarge

The top picture is of Evan at 9 days old and the bottom at 2 1/2 years. There are some mixed feelings with people I know about 'putting Evan's photo out there for all to see'. The top photo is already on my blog as well as a few others, with my permission. And as much as it is a photo that maybe frightening or hard to look at, it's the truth and is what Evan looked like when he was born. There is no sugar coating it, it is what it is. I know that there are evil and ignorant people out there but the way I look at it is that education should be honest. And that is what this picture represents. No, I have no control what the creeps and trolls do but if I don't educate others then misconceptions will continue. 

My boy is beautiful. He is an amazingly happy little man and always has a smile on his face. He will grow up knowing that he is perfect just the way he is.

 

The Season of Giving..

I hope everyone had a very Merry Christmas and a Happy Holiday! The new year is just around the corner and more of our family celebrations have yet to be celebrated. I have been a little MIA from the blog to the point where this is the first time I have logged in, in over a week. As you could probably tell from my last post, Heartbroken, it was a pretty gloomy week here before Christmas.

That whole situation has made me appreciate life even more and has made me feel so incredibly fortunate for everyone and everything in my life. The whole "26 Acts of Kindness" is a wonderful avenue to pursue which I am partaking in. In light of the holiday season, I ask you to consider making a donation to a charity, help out another who is in need or volunteer somewhere. And to make sure your loved ones know how grateful you are to have them in your life. I am so grateful to all of my family members, friends and strangers who have been so kind to Evan and to all who have supported the FIRST Foundation.

Even though my life feels complete, a cure for my baby is all that could entirely complete my life. Possessions and luxuries could never truly make me happy or feel 'completed'. Every shooting star, lucky penny, or wish I make, is for a cure to be found someday for my lil man. A cure from the comfort issues with scales & dryness, dehydration, crazy metabolism, and infection risks. I would never want to change the way my baby looks but if  I could take away all the complications and life threatening challenges I would in a second. Maybe someday it will be found. Fortunately Evan is a happy little man so we will do just fine until then. (I keep telling my sister to go into Ichthyosis research since she is a Scientist and is pretty much a genius with genetics and pharmaceutical research.)

No matter the 'Act of Kindness' you choose, it will make your soul feel better. The FIRST Foundation is a wonderful non-profit organization that connects families who are affected by Ichthyosis and educates those who are not familiar with the disorder. They host conferences both national and regional to connect families and share the newest information regarding research and treatments. This foundation also helps fund research for a cure. They have been nothing but a wonderful conection for our family.


A few other charities you may be interested in helping:

Autism Speaks- www.autismspeaks.org
    In memory of Rachel D' Avino, a Behavior Analyst who lost her life in the Sandy Hook tragedy.

Trisomy 18- www.trisomy18.org
    In honor of two miracles I personally know who are affected by Trisomy 18

Debra- www.debra.org
    In memory of a little boy named Tripp Roth and in honor of a baby boy named Easton Friedel who is currently fighting Epidermolysis Bullosa to stay alive.

Thank you!! Enjoy your New Year celebrations!!!