Ichthyosis awareness

1 year and 5 days ago I had an 11 day old preemie in the NICU at Children's Hospital Los Angeles.  I was anxiously awaiting the results of a skin biopsy that would explain why he was so raw and blistery everywhere.  I wasn't supposed to get the news for another week, but the preliminary biopsy report came back early.  My son was diagnosed as having epidermolytic hyperkeratosis, or EHK for short.  

With a diagnosis in hand, but no real information about it, I started researching.... and researching... and researching.  It was surprisingly difficult to find good information about EHK.  After a few days of researching and reaching out for help on a few different websites, I received my first contact with another mom who had an affected son.  That day was one year ago today.  What an appropriate way to start ichthyosis awareness month!  Through her and then many others, I learned about ichthyosis and that there are actually many different types.  Jared and I were able to attend a conference and learn even more.  After one very long year I feel like an expert on EHK and I've now been in the position where I have been able to give advice to other parents.  I feel qualified enough to share what works for us, with others. 

Wyatt has dry, scaly skin that grows about 300% faster than 'normal' skin.  It is very fragile and blisters easily.  He doesn't sweat so he overheats easily.  Because his skin grows so quickly he requires about 50% more calories than most children.  Between long baths, frequent lotioning, and descaling, his skin care totals up to about 1.5 hours a day

I feel lucky to have been blessed with this little guy.  Through him I have learned and grown so much.  I have met people that are truly inspiring.  Through him, I have made a new family.

May is ichthyosis awareness month.

When you see someone that looks a little different, please don't stare.  Please don't be afraid.  And please don't be afraid to ask.  When you ask, it gives people like me the opportunity to teach you about something new.  When you ask, it give you the opportunity to learn and to be aware.

We are asking all of our family and friends to please consider making a donation to FIRST.  Just $5 or $10 helps make a big difference.  By helping FIRST you're helping families like mine, you're helping to raise awareness, and you're helping to find a cure.

If you'd like to donate, click on the paypal link towards the top right of the page under Running for Research Fundraiser.