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Stories: Programs

Hardship Heroes Inspiration

Lennon illness photos 10-2.jpg


Hardships- Cystic Fibrosis, Congenital Hypothyroidism, Congenital Scoliosis, Ectodermal Dysplasia

Lennon was diagnosed with Cystic Fibrosis (An inherited life-threatening disorder that damages the lungs and digestive system) and Congenital Hypothyroidism (a condition in which her thyroid was underdeveloped in utero resulting in less production of critical thyroid hormone) at birth through the newborn screening.

*Newborn screening in Pennsylvania is completed to ensure every newborn is tested for genetic diseases. The testing performed identifies babies with certain disorders which, without intervention, may permanently impact newborns and their families. Early recognition and treatment of most of these disorders leads to a better outcome for the newborn.

Without this newborn screening Lennon’s life outcome would have been much different. Without any medical intervention Lennon would have developmental disabilities among many other challenges. She also wouldn’t be getting the important life prolonging treatment that is needed when diagnosed with cystic fibrosis.

At age 3 Lennon became diagnosed with congenital scoliosis through a routine lung x-ray for cystic fibrosis. Congenital scoliosis is a deformity of the vertebrae bone during development in utero. Typically congenital scoliosis results in surgery potentially during teenage years.

The road doesn’t end there as Lennon was recently diagnosed with Ectodermal Dysplasia. Ectodermal Dysplasia is a genetic condition in which ectodermally derived structures (in Lennon’s case teeth, skin, nails and sweat glands) develop abnormally. Currently Lennon is showing that she is missing all of her bottom adult teeth as well as two adult teeth on top. She has a long dental road ahead of her as this has become a very complicated situation.

However through all of this you would never know Lennon endures such hardships! She is a beautiful, happy, free spirit. She tells people she has cystic fibrosis nonchalantly and does her treatments in stride. Even though Lennon is my 6 year old daughter I look up to her in so many ways. She is not strictly defined by any of these illnesses, however they have created an outstanding resilient little human that the world deserves to see. That is why she is a Hardship Hero!

Hardship Heroes Presents - Lennon's Story
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