Meet Micah

The Lea Marie Faraone Foundation (LMFF), a nonprofit organization working to improve the lives of young people fighting Cystic Fibrosis and chronic illnesses, today announced the organization will be awarding a home hydrotherapy pool to Micah, The Lea Marie Faraone Foundation (LMFF), a nonprofit organization working to improve the lives of young people fighting Cystic Fibrosis and chronic illnesses, today announced the organization will be awarding a home hydrotherapy pool to Micah, a 3-year-old patient at The Johns Hopkins Hospital who has a rare form of Congenital Muscular Dystrophy (CMD) due to LAMA2 mutation.

CMD is a slowly progressive degenerative muscle disease characterized by profound weakness and muscle wasting with pulmonary and cardiac complications. LMFF’s donation for Micah, a Manchester, Maryland resident, is part of the organization’s “Fly Me to the Moon” grant program that provides special equipment and resources needed for those with chronic illnesses so they can maintain their healthcare to its highest standards and improve their quality of life. Micah has not been able to participate in hydrotherapy since the start of the COVID-19 pandemic, and most of his therapies have been shifted to the home setting.

He has previously benefitted from physical therapy sessions conducted in the water. By allowing the water to support his weight, he is better able to exercise muscles that the cannot normally utilize, and better manage the stretching exercises he needs to remain limber, prevent joint contractures and delay the progression of scoliosis. This home hydrotherapy pool will allow him to continue participating in this valuable modality of therapy by incorporating it into his daily routine and will remain useful to him throughout his life.

“This type of equipment donation is what our foundation is all about, said Laura O’Donnell-Faraone, Director and co-founder of the Lea Marie Faraone Foundation. “While Micah’s family does have health insurance, it does not cover the costs of a therapy pool. Because of the pandemic he is missing out critical care he needs, and his quality of treatment is suffering. We hope this pool will support his treatment and improve Micah’s life as he battles this difficult disease.”

LMFF was founded in December 2018 by the Faraone (pronounced, Fah-Rone) family after the passing of their 28-year-old daughter Lea Marie Faraone from Cystic Fibrosis complications. Lea worked as an infusion nurse at Good Samaritan Hospital in Baltimore, Maryland and fell in love with advocacy work, particularly for those battling chronic illnesses. She worked and volunteered with the Maryland Chapter of the Cystic Fibrosis Foundation and served as a national ambassador for the Cystic Fibrosis Foundation Great Strides Campaign.

Lea strongly felt that since all individuals fighting chronic illness might not see a cure in their lifetime, there should be work done to help their quality of life now. LMFF strives to carry out this mission while keeping the memory of Lea alive in its work. The organization is currently conducting an online fundraiser, the #WHYWAITFORWINGS National Snapshot Challenge where fundraisers post photos/videos on social media living their best life and earn donations for the content they share. CMD is a slowly progressive degenerative muscle disease characterized by profound weakness and muscle wasting with pulmonary and cardiac complications.

LMFF’s donation for Micah, a Manchester, Maryland resident, is part of the organization’s “Fly Me to the Moon” grant program that provides special equipment and resources needed for those with chronic illnesses so they can maintain their healthcare to its highest standards and improve their quality of life.

Micah has not been able to participate in hydrotherapy since the start of the COVID-19 pandemic, and most of his therapies have been shifted to the home setting. He has previously benefitted from physical therapy sessions conducted in the water. By allowing the water to support his weight, he is better able to exercise muscles that the cannot normally utilize, and better manage the stretching exercises he needs to remain limber, prevent joint contractures and delay the progression of scoliosis.

This home hydrotherapy pool will allow him to continue participating in this valuable modality of therapy by incorporating it into his daily routine and will remain useful to him throughout his life.

“This type of equipment donation is what our foundation is all about, said Laura O’Donnell-Faraone, Director and co-founder of the Lea Marie Faraone Foundation. “While Micah’s family does have health insurance, it does not cover the costs of a therapy pool. Because of the pandemic he is missing out critical care he needs, and his quality of treatment is suffering.

We hope this pool will support his treatment and improve Micah’s life as he battles this difficult disease.” LMFF was founded in December 2018 by the Faraone (pronounced, Fah-Rone) family after the passing of their 28-year-old daughter Lea Marie Faraone from Cystic Fibrosis complications. Lea worked as an infusion nurse at Good Samaritan Hospital in Baltimore, Maryland and fell in love with advocacy work, particularly for those battling chronic illnesses.


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