Phantom Tea

It is time for the annual Phantom Tea. A Phantom Tea is a time when you can sit back, drink a cup of tea, and make a donation to help people afflicted with ichthyosis. As many of you know, my youngest son has Lamellar Ichthyosis, a very rare genetic skin disorder. I think there are only 75 people born with his form of Ichthyosis a year in the United States.

Due to the rarity of the disorder and the fact that the disorder is genetic, there is very little you can do in the ways of a cure. The research is mainly focused on lotions, creams and the such that will help to make the person more comfortable. Most people have never heard of ichthyosis much less know someone who has had it, so donations to help these people is minimal.

If you would like to make a donation in  you can go directly to the website: FIRST: Foundation for Ichthyosis and other Related Skin Types.

PHOTO DOWNLOADED FROM FLICKER.

Some Facts About Lamellar Ichthyosis

• Babies Born with Lamellar Ichthyosis have a collodian membrane. It is a very plastic-like layer of skin that takes a couple of weeks to peel and then his"new" skin is revealed.
• The skin is always tight and itchy.
• Due to his skin not shedding, these kids do not sweat. This is a big problem. Going outside in weather over about 75 is dangerous. They could get heat stroke and die.
• The skin has to be peeled off or it will rot on the body.
• A cooling vest is a life saver for these children. It allows them to spend a little more time outside than they would be able to otherwise. The vest weighs 5 pounds when it has all the cooling packs in it.

 Please do not feel obligated to make a donation by any means.

We all have various diseases and the such that affect the people we love. There is no way to donate to every cause out there.

This is a cause that just happens to touch my family and our life daily.

Thank you for taking the time to read this post. It lets you know a little bit more about a little guy that is very special to me. Please pass along information about ichthyosis to someone you know. The more people that are informed the less stares and ugly comments we endure in public. Thanks a bunch.

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