You heard it from a grandma...

I remember when my sweet Natalie was born ( granddaughter #4 ) she had some odd skin issue that my daughter was hesitant to name.  I am an LPN of 43 years and like to research things. Natalie has ARCI-lamellar ichthyosis.

I have a dear picture on my refrigerator of Natalie just home from the NICU being held by her then 18-month-old sister Harper and her daddy, she looked so little and fragile. We were not sure of the future for this baby, with dry eyes and dry skin, who just didn't look quite right.

As the months progressed there were so many questions...... would she ever blink her eyes, grow eyebrows and eyelashes , and hair on her head  (she did grow a nice head of hair and then later shed the hair) now she has a beautiful head of hair, and all the rest.

Sometimes her mommy would cry with concern, I would remind her of the available and supportive FIRST private Facebook groups and the calls she could make to the foundation itself.  What encouragement they were to her and still are. I devour any materials from FIRST in the mail and online. FIRST is a gift from God.

At one of Natalie's early appts to have her ears cleaned, Amy was met by an unkind nurse. "You know she said, this baby may be deaf, she will possibly be delayed, and you better get early intervention involved"  This did not happen.

Now let me fast forward to Nat Nat, the just turned 2-years-old. OH MY WORD !!!!!!!!!!!!!! She is a blast. God really knew what he was doing when he gave her the personality she has. Her mommy and I have a saying "WHAT SKIN"? Mom and dad have a horse farm, when I take the little ones home, there is no need of car seats, as it's dirt farm lanes. As we approach the arena, Nat stands up on my lap yelling "hey hey" to anyone she can find. I don't know how many words she knows, as she uses new ones each day lately. She is a joy, a blessing, and well known among the horse/rodeo world.

I like to help by oiling her prior to her naps Mon thru Friday. How can a child absorb so much Aquaphor, it’s just crazy.

Speaking of crazy I am crazy for Natalie, she is adorable, nuts, hilarious, outgoing, a blast, and smart too.  And you know what she is petite with a long torso " built to ride" her mom says.  Did I say her first word was "horse"?

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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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