Enjoy the Life You Have Been Given
by Donna K.

Our son, Alec was born on February 7, 2002.  He arrived 4 weeks before his due date and was delivered by c-section.  When he was born I did not hold him because the hospital was not sure what was going on with his skin.  He had a collodion membrane covering him from head to toe.  The nurses told me how he looked before they brought him over

“I remember thinking how can I do this?  What does the future hold?  Why us?”

for me to see.  My husband went to see him immediately after he was born and I knew from the look in his eyes that something was not right.  I will never forget his little white face and red body.  I remember that I thought he had no ears because I did not remember seeing them. 

The doctors diagnosed him with ichthyosis a few hours after he was born.  He was in the neonatal unit at York Hospital in Pennsylvania for two weeks.  The doctors and nurses were fabulous and took wonderful care of Alec and helped us learn how to take care of him.  They were in contact with Johns Hopkins Hospital Department of Dermatology in Baltimore throughout Alec’s stay.  We were very blessed that my husband’s sister is a neonatal nurse at York Hospital so he always had family with him.   

The day Alec came home was filled with excitement and worry.  I remember thinking how can I do this?  What does the future hold?  Why us?  We visited the FIRST web site often when we brought Alec home.  Alec was home a few weeks before he was seen at Johns Hopkins for a concrete diagnosis.  That first visit confirmed that Alec had ichthyosis - ARCI-lamellar ichthyosis.

“It has taught us that we are a really strong family.”

In the last 11 years we have tried many lotions and potions for Alec.  He currently uses Neostrata Problem Dry Skin lotion and Aquaphor or Cera Ve in the morning after soaking for about 30 to 40 minutes in the tub.  At his night bath we use Aquaphor or Cera Ve with Acetylcysteine 10%/urea 5% ointment.  We also use Fluocinolone Acetonide .01 topical oil on his scalp and leave it in over night to help loosen up and scaling.  We also use 40% urea Cream on his feet, hands and knees layered with Cera Ve.  He started taking Soriatane in August and it has made a world of difference in his appearance and the way he feels.  

Alec’s personality is very outgoing and he lets nothing hold him back.  We continue to encourage him and let him know that he can do anything.  He will be playing baseball this coming spring for the second time.  As long as we can cool him down and he has plenty to drink he does very well. 

Our journey with Alec has been a mix of many emotions and lessons.  It has taught us that we really are a strong family.  When you have the love and support of your family you can weather the ups and downs.  You can survive and thrive.  The most important lesson I have learned is to take one day at a time and don’t let the worry of the future take your energy. It is okay to think about the “what ifs” every now and then but do not dwell on them.  Have faith and enjoy the life you have been given.

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Neither FIRST, its Board of Directors, Medical & Scientific Advisory Board, Board of Medical Editors, nor Foundation staff and officals endorse any treatments listed here.  All issues pertaining to the care of patients with ichthyosis should be discussed with a dermatologist experienced in the treatment of their skin disorder.

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