Winning Hearts – Girl With NOMID Inspires

Neonatal Onset Multisystem Inflammatory Disease (NOMID) is one of the rarest genetic diseases in the world, but Tilly Bailey, 17, and her family know all about it.

Tilly has NOMID, a disease under CAPS, and despite her disabilities, provides joy and happiness to her friends and family, and now to her co-workers every Saturday.

Tilly has been manning the counter at the Amy Childs Salon, not far from her home in the United Kingdom. Her father, Colin, couldn’t be happier for her. He says she has a sense of independence and freedom, and greatly enjoys the staff and customers. In fact, Colin reports when Tilly is reluctant to get started with her day, from the moment she arrives at her job, she is a changed person. She tells him to “leave her and her insecurities go!”

Tilly recently had the opportunity to visit the set of the X Factor and meet celebrity Simon Cowell, as well as the show’s contestants. It was an exciting night for her, and she greatly enjoyed the entire experience.

Tilly is currently housebound after a fall in which she broke her right leg. To her delight, Amy Childs and others visited her, showering her with presents, and making her laugh for over an hour.

In previous years, Tilly has traveled to the United States for treatment twice a year.

Treatment is now available in the UK, and Colin says that she will transition to an adult hospital when she turns 18.  At this time, Tilly’s parents and doctors are discussing her future treatment plan. In the meantime,there is no doubt she will continue to inspire all the lives she touches, and continue to raise awareness about NOMID.

Source: Brentwood Gazette
Source: Brentwood Gazette

All Imagery Courtesy of Brentwood Gazette


Erica Zahn

Erica Zahn

Erica Zahn is passionate about raising awareness of rare diseases and disorders and helping people connect with the resources that may ease their journey. Erica has been a caregiver, and is a patient, herself, so she completely relates to the rare disease community--on a deeply personal level.

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