A 2-year-old with a rare genetic skin disorder called harlequin ichthyosis was the target of harassment over the course of a year.

By Maressa Brown
November 14, 2019
Jennie Riley

Raising a little one who's living with a rare health condition is challenging. So, it's heartening to know that a mom named Jennie Riley, whose 2-year-old daughter Anna was born with a severe genetic skin disorder called harlequin ichthyosis, has received overwhelming support and love online, especially after writing a story about her journey on Love What Matters last year. But Riley has also had to contend with a year of harassment aimed at her little girl.

A 26-year-old Long Island woman named Krista Sewell was arrested last week after sending threats to Anna on Facebook, Instagram, the child's GoFundMe page, and U.S. mail. The exact nature of the threats is unknown, but Sewell now faces charges of aggravated harassment as a hate crime.

In response to the arrest, Riley, who resides in Ulster County, New York, offered the following statement:

"In 2017, my daughter Anna was born with a skin condition called harlequin ichthyosis. This condition is very severe, and I have made a choice to educate people publicly on Facebook and Instagram. Although I knew there was a possibility for negativity I never expected to receive the messages that were sent to me. Over the past year I have fought a battle I never thought I would fight, and I felt fear no mother should feel. I want to thank the New York State Police and the Ulster County Sheriff’s Department for their diligence, dedication and most of all their compassion. I hope we can all learn from this and understand the importance of teaching our kids kindness and acceptance of visible differences."

Jennie Riley

Riley also addressed the situation on Anna's Facebook page last week, writing that she had been fighting a hidden battle for the past year alongside Mui Thomas from The Girl Behind The Face, who was also targeted. "Countless messages, emails, and comments have been sent to us all much to graphic to share," Riley wrote. "It is not only not OK to send these types of messages, it’s also illegal. Ichthyosis is incredibly hard for anybody to live with, and I personally choose to live without hate in my heart. As shocking as this whole thing has been, I pray that instead of getting angry you would choose to make a positive out of this and donate to the foundation for ichthyosis."

Children like Anna who have harlequin ichthyosis are born with very hard, thick skin covering most of their bodies, according to the National Institutes of Health. The abnormalities affect the shape of the eyelids, nose, mouth, and ears, and limit movement of the arms and legs, and restricted movement of the chest can lead to breathing difficulties and respiratory failure. The NIH notes that it used to be very rare for affected infants to survive the newborn period, but thanks to medical support and improved treatment, people with this disorder now have a better chance of living into childhood and adolescence.

As she stated in an additional Facebook post on the matter, Anna's mom hopes that ultimately, her story will "bring cyber harassment to the forefront, and teach people that a real person is always at the other end of your comments and messages."

If you want to support families facing ichthyosis, you can donate to Foundation for Ichythosis & Related Skin Types (FIRST)

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