Tub Fund

In March of 2010 my husband and I were preparing like most would for our first child. We had 3 weeks left when I went into labor. We were blissfully unaware at the time of what would happen when our daughter was born. At birth it was apparent that something was wrong. The nurse called out for help and no one in the room had ever seen this before. Until one neonatologist came in to the room and stated that she was a collodion baby. He said it had been 25 years since he had taken care of a baby like ours and that she had ichthyosis. We were very afraid and didn’t know what to expect. We learned most of our information through the First Skin Foundation http://www.firstskinfoundation.org/ , which is where we now have most of our connections. It is a small community because of the rarity of the disorder.

 

Quinn's NICU stay was about a  month. It was a week before we could hold her. When we did it was with a gown, mask, and gloves. Her stay included shedding of the membrane, which took a little over a week. A nasogastric tube, an umbilical line, sepsis, a lumbar puncture and resuscitation. The hardest part was leaving her behind while we drove home with an empty car seat in the backseat.

Then came Aaron in May of 2012. He was born 5 weeks early with the same condition as Quinn. At this point the NICU staff was like a second family and with my background as an RN and my husbands as a firefighter/paramedic, we were part of the "staff" that managed our childs care. Aarons stay went smoother than Quinns. He had to endure the same shedding process and umbilical line, but his complications were more from his prematurity.  He also had parents, nurses, and doctors who were now experienced with this particular disorder.

 We were told that we have a 25% chance of having a child with ichthyosis every time we have a baby. We did have a third child, Reese, in November 2014 who is unaffected. She decided to have her own NICU stay for an unrelated reason, but that’s a whole different story.

 Ichthyosis is a life long genetic disorder of the skin. Quinn and Aarons specific type is Non-bullous congenital ichthyosiform erythroderma. Their skin is thicker than most because they regenerate it quicker than they can lose it. It causes them to be dry and itchy at all times. The skin on their feet frequently splits and bleeds. Because of the layers of skin bacteria gets caught easily and skin infections are a common problem. Their ears become impacted with skin and wax and need tending to on a daily basis. The skins thickness also prevents sweat from being excreted. Their day consists of full body lotioning multiple times a day, with "spot" treatment in between. They also do "super socks" before bed which is lotion, aquaphor, then wrapped in saran wrap and covered with socks. They get daily baths and exfoliation Have regular ear drops and cleaning out with a curette. We also never leave the house with out water and except for in the winter our frog toggs (cooling cloths). We are in the process of trying to get cooling vests for them and approval for air conditioners in their classrooms.

 

We recently discovered a product that could greatly improve the quality of our childrens lives and it is the microsilk tub by Jason International http://www.jasoninternational.com/wellness/ichthyosis.aspx . The micro bubbles help lift away the extra layers of skin. This helps lessen infection and itching, while improving mobility and comfort. People who have used this product with ichthyosis have expressed how much better they feel. We submitted all of this to our insurance along with pictures of people who have had significant improvement in their skin and letters from our pediatrician and dermatologist at Boston Childrens Hospital, but we were denied. They didn't feel it qualified as durable medical equipment. We really believe that this is going to make Quinn and Aarons lives better. We can’t afford to buy one ourselves. We are asking for help. Help to possibly prevent hospitalizations related to infections, help have less time on skin care and more time playing, help to have less time crying and scratching from discomfort. If we exceed our goal we will forward the rest of the proceeds to The First Foundation to continue research. In the ichthyosis family we are very fortunate. There are many families who have types that are much more severe. Please take the time to check out First's website and learn more about what they go through.

 Thank you so much for taking the time to read our story. If you are able to donate to our microsilk tub fund we can't even describe the amount of appreciation we would have.  They are great kids who rarely complain and as their parents we want them to have full lives, thank you for helping us do that.

 

-Meghan and Brian