10 Minutes With: Jennie Wilklow-Riley
Meet Jennie, mom to three kids, including Anna, her youngest, who was born with a rare genetic disorder called Harlequin Ichthyosis. Below, she talks to us about life with Anna, her passion for helping other families who are touched by the same condition, and how confidence and kindness will go a long way in making Anna’s future a place where she will feel accepted and included.
MTEAM: Tell us a bit about yourself and your family.
JENNIE WILKLOW-RILEY: My name is Jennie Wilklow-Riley and I am married to James Riley. We are from upstate New York and have three kids: Andres (10), James (4), and Anna (20 months). We have three dogs and two cats and we really just had a peaceful average life.
MTEAM: Your daughter Anna was born with Harlequin Ichthyosis. How common is it? Can you explain a bit about what it is exactly for those who are unfamiliar and how it has manifested itself in Anna’s life in particular?
J W-R: Our daughter Anna was born on September 17, 2017 with Harlequin Ichthyosis. This an ultra rare genetic disorder that affects an estimated 1 in 500,000 to a million births annually. Estimated numbers vary greatly because of how rare it is. This disorder is from a genetic mutation on the Abca12 gene that causes the outer layer of skin to not form correctly.
MTEAM: Tell us a bit more about Anna! (How old is she? What does she love most? What makes her happy? What makes her uniquely Anna??)
J W-R: Because of the skin not forming correctly, Anna’s body creates skin at an accelerated rate in an attempt to fix itself. Anna produces skin at ten time the average rate and cannot complete the shedding process on her own. A typical day starts with a 3-4 hour bath to help her extra skin come off. She also needs a lot of calories because the the skin production uses so much of the body’s energy. Anna then is covered in aquaphor to try to seal in any hydration that can be kept in the skin. Anna cannot sweat and she can hold in moisture either. Temperature control is also a big obstacle, because she can overheat easily.
MTEAM: What’s a typical day in Anna’s life like?
J W-R: With her medical needs aside, Anna is a normal sassy 20-month-old. She is all over the place, getting into everything and she loves to eat! Anna really enjoys going outside to play and she thinks dancing is the best. Anna thinks accessories are amazing and insists on a headband every day and often sunglasses or jewelry. Basically, she is the coolest human that has ever existed.
MTEAM: What have been some of your biggest challenges and the best rewards along your journey with Anna so far?
J W-R: My biggest challenges came first: getting her out of critical condition when she was born and then the time when I first came home with her from the hospital. I struggled to understand why this had happened to me and how I was supposed to cope. I felt like it was all my fault for wanting a girl so badly. My biggest rewards are to long to list, but Anna herself is at the top of the list. The joy she gives me every day is irreplaceable, and I think often how I almost didn’t have her. Second would be my ability to help others in the Ichthyosis community. Either with acceptance or supplies, the list never ends and it’s truly a passion.
MTEAM: What advice would you offer to other parents who are just finding out about a Harlequin Ichthyosis diagnosis?
J W-R: I have been lucky enough to speak with a few new moms already either Harlequin or other Ichthyosis types. I always get them in touch with FIRST (the Foundation for Ichthyosis and Related Skin Types). After, I just tell them to take one day at a time and soon enough it will be your new normal.
MTEAM: How would you like to hear other parents respond if their own children notice and ask questions about Anna’s physical differences?
J W-R: I just don’t think it helps to quiet your kids and rush them away. Teach them to treat people like humans first of all and then, once a relationship is established, ask respectfully the questions you might have. I would rather a child come up and ask nicely because usually once they understand, then they go about their life like nothing happened.
MTEAM: What key changes would make this a more inclusive world for children with Harlequin Ichthyosis?
J W-R: The biggest change I would make is to not make everything so taboo. I want to change the way the world looks at rare and, instead of negative, I want to see a positive spin put on being different. It’s not only okay to be different, it’s also wonderful and beautiful.
MTEAM: Share a memory of one of the times you’ve been especially proud of Anna.
J W-R: I’m proud of Anna when she is very outgoing. I love when she says hi to strangers and waves and blows kisses. I think if she can hold onto that level of confidence, then she will be just fine.
MTEAM: What’s one thing you’d like the world to know about Anna or Harlequin Ichthyosis or medically complex or fragile children generally?
J W-R: I would like the world to know that behind the child that looks different, there is a human being. They hurt just like you hurt and they want acceptance just like anyone does. Sometimes it’s okay to not get an answer to every question you have and just to treat people how you would want to be treated.