Ellie’s Exposé

The day after my daughter Ellie was born the nurse gave her a bath and said, “I had a tough time getting all the vernix off.” I didn’t know then how those words were kicking off a new path in life: ichthyosis. By sound it seems like something icky, disgusting, gross. I hate the name ichthyosis, and I hate what it’s done to my daughter. But ichthyosis doesn’t define who our little Ellie is. Ellie is silly, funny, cuddly. She loves music and dancing. She likes going for walks, swinging, and playing with her brothers. She gets excited to draw and get out from behind the four walls of her home. She’s a typical two year old in those ways.
Ichthyosis has slowed down Ellie in many ways. She doesn’t eat, relying on a g-tube. She’s the size of a one-year old as she struggles to gain weight because her caloric needs are so high since her skin turns over at 10 times the rate of a “regular” person. She can’t walk, and she can’t open her hands. She cannot talk but has found ways to communicate what she wants. She has been hospitalized three times, and not overnight stays. She is in every type of therapy there is, almost every day, and I have to believe she’s running out of specialists to see. Her disorder affects her life in every way. Obviously, it modifies her appearance, although she doesn’t know it. Yet. It affects the lives of her brothers too, but they don’t complain and don’t see Ellie as different. They just see their sister. As someone who looks just like every other baby. It’s heartwarming and heart breaking because I know other kids may not be as lovingly blind.

Ellie is one of two known people in the entire world with her form of ichthyosis. She is being researched at Yale University, and we found out that the funding which DIRECLTY goes to finding treatment for our little girl was cut IN HALF and is at serious risk of being defunded all together by proposed budget cuts to the NIH. When I say that this money is funding her research, I really do mean that it impacts Ellie directly. Money is being taken away from Ellie that could one day allow her to lead a life where it doesn’t hurt to take a bath or change her clothes.

For now, we just love on Ellie while we wait. We celebrate every milestone. We follow every doctor’s and therapist’s instructions. My little 2 year old will grow up knowing how much she is loved and how far we are willing to go. But that’s not special or exceptional. That’s being a parent. That’s being in love with your child. ELLIE is special, brave and strong. She is the hero of this story and will always be a source of inspiration.

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Neither FIRST, its Board of Directors, Medical & Scientific Advisory Board, Board of Medical Editors, nor Foundation staff and officials 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.