Every once in awhile you come across a story that just needs to be read. This is one of them. Thru the wonderful world of Twitter, I have met many friends. Some 98 Degrees Fans, Some New Kids on the Block Fans...
But I have also been opened up to a world where, I dont feel alone. Everyone out there is being touched by something. So I started thinking I have been thru so much in my past..How can I help others?? Then I realized post there stories on my Blog...A story that needs to be heard but otherwise will not...'
So please read on...have the tissues ready for this Amazing Little boy!
This week (Oct. 4-11th) is National Ichthyosis Awareness Week. You're probably saying, "Ichthy-WHAT?". Ichthyosis is a rare genetic skin condition, and my son has a form called Nethertons Syndrome. It affects only 1 in a million people! This blog is not only my way of informing others about Ichthyosis, but also a mommy bragging about her amazing little boy!
"Ichthyosis" is taken from the Greek root for "fish".
*Ichthyosis affects more than one million Americans.
*The ichthyoses are a family of genetic skin diseases characterized by dry, thickened, scaling skin.
*Dermatologists estimate that there are at least twenty-eight varieties of ichthyosis, with a wide range of severity and associated symptoms.
*Ichthyosis is the result of a genetic mutation passed from parent to child.
*In some rare cases, the genetic mutation occurs spontaneously in the affected generation.
*There is no cure for ichthyosis, only treatments to help manage symptoms.
*Ichthyosis is currently classified on the basis of clinical appearance and inheritance pattern. This system, which relies on a few sophisticated tools and tests, has worked remarkably well for diagnosing and classifying most patients with ichthyosis.
*Ichthyosis can be a disfiguring disease and as such has numerous social and psychological implications.
When my son was born over 2 years ago, it was the happiest day in our lives! But our happiest day, quickly turned into one of our saddest. What every pregnant woman hopes & prays for is a healthy baby, but we soon realized Tyler was not ok. When he was born, he was 5 weeks premature. He was a bright red in color and his skin was extremely dry and peeling everywhere! His first night in the hospital, he became severely dehydrated and had to be transferred to DeVos Children's Hospital in Grand Rapids, Michigan. It was there that the diagnosis of ichthyosis first came up. Ty spent the next 10 days in a humidified incubator, so that his dry skin would stay moist and it helped to regulate his body temperature, which he was not able to do on his own.
When the day finally came to take him home, we still did not have a definite answer as to WHAT form of ichthyosis he had. There are over 20 different forms! I was both excited and scared to bring him home. Excited of course because my baby was finally home where he belonged. Scared because I didn't know if what he had was life-threatening; if I was treating his skin correctly; if he was ever going to be "normal" looking. Thankfully, I discovered a group of other parents and adults ONLINE who had ichthyosis, and also had Tyler's rare form, Netherton's Syndrome. Without their knowlege and support, I don't know how I would have been able to cope with it all!
Ty's skin is like a separate entity in itself sometimes. He constantly has to be "greased up" with Aquafor to keep his skin hydrated. With his form of ichthyosis, dehydration is an issue. His body is constantly burning calories to keep up with the amount of skin cells he is reproducing and shedding. Another side effect of this is slow growth. He is in the 3% for his weight and 10% for his height in his age group. Many children with Nethertons Syndrome require feeding tubes in order to maintain or gain weight. Luckily, Ty has not had to endure that! But he has had to endure NUMEROUS skin infections. His skin (which in NT, he is actually MISSING a skin layer), is more prone to infections. He has had several bouts of MRSA on his scalp and other staph infections. He has been on antibiotics for over a year now! Another issue of Nethertons is allergies, particularly food allergies. Ty is allergic to wheat, eggs, milk and nuts! Plus, numerous enviromental allergies! His skin also is prone to eczema and hives. So he is constantly itchy! :(
But probably the hardest part of having a with a child with Ichthyosis, is the Social aspect of it all. All parents are inherently protective of their children. So when we are out and about, either at the grocery store or elsewhere, and I notice children whispering, or adults staring at my little boy, I just want to scream and shout! My little baby is not somebody to be stared at rudely, or someone to be whispered about, unless you are staring at his beautiful blue eyes or whispering that he has the most sweetest smile! What I prefer is when people ASK me what is wrong with his skin, because that gives me the opportunity to EDUCATE!
As any parent, I have concerns about my son's future. When he starts school, will he be accepted? Will he get teased? How will he deal with it all? Will he find someone to love him and accept him as who he is? If he has children, will they be affected with Ichthyosis? All of these questions and more I have, but as with anything, I have to deal with them one day at a time. When I see my son's sweet face, yes, I see ichthyosis, but I also see an amazing little boy who has had to deal with more stuff in his 2 years of life than I've had to deal with in my 34! And yet, He still has his amazing smile and a laugh that fills my heart with joy!
Being that ichthyosis is so rare, funding for research is hard to come by. There are many scientists out there that are looking for funding for their research grants, but not enough money to support them. PLEASE consider donating to the Foundation for Ichthyosis and Related Skin Types. Your donation may one day fund a grant that will discover a CURE to ichthyosis! For more information on ichthyosis, or to donate, please visit www.scalyskin.org.
Thank you for taking the time to read this blog and God Bless all my BH brothers and sisters! If you have any questions about ichthyosis, please DM me or contact me on my twitter page; PeachyKeen34 ! xoxo