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Shamrocks and Shenanigans

In honor of International Rare Disease Day, a day designed to bring awareness to the many rare diseases which are low in prevalence by high in complexity, I want to encourage you to check out the NFED webpage and the NFED Facebook Page.

For those of you who don’t know, my son and I are both affected by Hay Wells Syndrome, which is one of the ectodermal dysplasias.  The NFED is dedicated to bringing help and hope to families affected by ectodermal dysplasias worldwide.  I’ve been fortunate enough to grow up with them practically in my backyard.  I also now serve as a Family to Family Support Liaison for them, a role I started this year.

boy affected by hay wells syndrome

hay wells syndrome

Just this last week, I received an email from a new Mom, through my website, whose ten day old baby was just diagnosed with Hay Wells Syndrome.  I was able to offer her encouragement and hope, and point her toward the NFED.  It’s emails like that one that prompts me to talk about ectodermal dysplasias here and how they affect our lives.

For me, Hay Wells Syndrome means that I have no hair, only two natural teeth, no eyelashes or eyebrows, sensitive skin, and am unable to sweat properly.  I also am prone to sinus infections, since I have no cilia in my sinuses, and have conductive hearing loss.

For Mister, Hay Wells Syndrome means that his hair is abnormally textured and missing in some places, he has fewer than typical permanent teeth on xray, has no eyelashes or eyebrows, is prone to skin erosions, and unable to sweat.  Temperature control is our biggest concern with him.  He’s had quite a few surgeries on abnormally formed tear ducts and has to keep ear tubes in place to prevent further hearing loss and infection.

Our family is proud to help with awareness and fundraising projects whenever we can.

To that end, I want to tell you about a neat opportunity to help raise funds for the NFED.  It’s called Shamrocks and Shenanigans, and it begins tomorrow, March 1st and runs through March 17th.  It is our March fundraising effort, and Mister could win a Kindle Fire if he raises $3000.

Shamrocks and Shenanigans Prizes

You can help him by making a donation to the NFED and writing “in honor of Zane Higgins” in the “What prompted you to donate to the NFED” box.

Even if he doesn’t win a really cool prize, it would mean the world to him (and me) if you helped us raise funds and awareness!

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Don’t Sweat It Walk 2012 Follow Up

On June 30th, my family of four loaded up the van and headed to Mascoutah, Illinois for our first annual Don’t Sweat It Walk 2012, to benefit the NFED. Don't Sweat It Walk

As you all know, Mister and I are both affected by a syndrome of the Ectodermal Dysplasias, which results in our inability to sweat properly.  As a child, I didn’t tolerate the heat very well because on my inability to sweat properly.  My Sister and I often ran around outside in the summer with wet clothing on. Just as Mom knew the importance of keeping us cool, she also knew the importance of letting us set our own limits and even let me run track– though the doctor said it was ill-advised.

It goes without saying that our family knows full well the benefit of the NFED, so we couldn’t resist the opportunity to do whatever we could to help raise funds and awareness for this organization.

Mister enjoyed meeting the clowns, who were there to entertain the kiddos before the walk got underway.  He was officially dubbed Mister the Clown.  LOL.

Mister with the ClownsMister the Clown

Before we set off, I soaked my cami and custom rhinestone t-shirt, which was embellished with “Don’t Sweat It” and a star, as well as  Mister’s shirt.   Hubs carried a backpack that also had Mister’s cooling vest and plenty of water in it, just in case we needed it.

custom rhinestone t-shirt by Just Jencustom rhinestone t-shirt by Just Jen

About halfway into the 5K, I used some of the water we had on hand to rewet Mister’s shirt and scalp.  Me squirting MisterOften times, cooling techniques like that are popular even with those who can sweat, and Sister was soon begging to have water poured over her head.  Of course, I obliged her.

With only a mile left to finish, Mister’s ears started turning as bright red as my Don’t Sweat It Star shirt, so I put his cooling vest on him (we use a swim flotation trainer with the foam removed and ice packs inserted as a cooling vest).

The NFED had two air conditioned rest stops and cold water stations set up along the way, for those who wanted or needed them.  Not that we used them.  Oh no!  Mister needed the shirt that I was wearing, because he was the real Don’t Sweat It Star!

He insisted on running part of the 5K… which meant that I had to run part of the 5K… in 104 degree heat.  When I asked him why he was running, Mister said that he wanted “to win this race.” So as long as Mister spraying mehe wanted to run, I ran.  Hubs agreed to stay behind and tag with Sister, as she is our observant one (read pokey).  Mister and I finished the 5K in roughly an hour and twenty minutes.  Hubs and Sister were fourteen minutes behind us.

After the walk, I needed to cool off, so Mister returned the favor and sprayed my scalp.  Of course, he was THRILLED to be giving Mommy a dose of her own medicine.

Overall, our first Don’t Sweat It Walk went better than I even expected, considering the heat wave.  Our family raised close to $700 for the NFED, and had a blast doing it.  In fact, we had so much fun, we are registering to walk in another Don’t Sweat It Walk for September.

***Custom shirt provided by Just Jen***

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Wordless Wednesday- Growth by the Golf Flag

As I mentioned previously, we attend a charity golf tournament every year, to benefit the NFED.  I was sorting through some golf tournament photos, and was just amazed by how much Mister has grown.  These are photos from the last four tournaments.  My baby is growing up!

2009 NFED Golf Tournament2010 NFED Golf Tournament2011 NFED Golf Tournament2012 NFED Golf Tournament

It will be interesting to see how tall Mister is next to the golf flag next year!

(Pictures take with my Canon ELPH)

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Seeking Sponsors NFED #walk

My family of four is registered to walk in the first annual National Foundation for Ectodermal Dysplasias Don’t Sweat It Walk on June 30th.

NFED Don't Sweat It Walk 2012

We are asking everyone to consider sponsoring us for the walk, as we are trying to raise $1000 for the NFED. $500 air conditions a room for a child who cannot sweat.  I set the goal of $1000 for our family because I KNOW first hand what it is like to have a child who cannot sweat. Mister overheats very easily, and we can’t allow the temperature in our home to go over 73 degrees. If it does, he starts overheating. We have to put ice packs in his car seat when he isn’t in it, because the foam of the carseat absorbs heat and a ten minute car ride can result in a body temp of 104 if we haven’t iced his carseat beforehand. We are fortunate that our cooling bills are within our budget. I know families that aren’t as fortunate.

We are nearly at the halfway mark to our goal of $1000.

The NFED is a 501c3 and donations are tax deductible.

If you would like to donate $5, $10, $25, or even $100 to sponsor my family in the walk, let me know and I can email you the details on where to send the check.

We would also appreciate your prayers. The walk is on June 30th. Mister doesn’t sweat, and I barely sweat, so we will be using our cooling gear to get us through the 5K!

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Don’t Sweat It Walk 2012

As you may know, my son and I are both affected by  a form of Ectodermal Dysplasia.

This year, we are excited to participate in our first annual Don’t Sweat It Walk to build awareness for ectodermal dysplasias while raising much needed financial support for the National Foundation for Ectodermal Dysplasias. The Foundation is funded Don't Sweat It Walk Logo Final 72 DPD white Backgroundthrough the support of donations and fundraisers such as this.

And now, you can help us make a difference on June 30 in Mascoutah, Illinois.

Please, join us in Mascoutah and WALK to raise funds and awareness for ectodermal dysplasias. It will be the best $25 you have ever spent. You can register online for the Don’t Sweat It Walk 2012.

If you cannot attend the Walk, please consider making a donation online through the same link above.

Not in the St. Louis Metro area?  There are walks scheduled across the U.S. in June, perhaps one of them is closer to you!

Bethel, Missouri – June 23, 2012

Grove City, Ohio – June 23, 2012

Poughkeepsie, New York – June 23, 2012

Tracy, California – June 23, 2012

Mascoutah, Illinois – June 30, 2012

Newark, California – June 30, 2012

Thanks in advance for your support!

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