Rare Diseases

The college sophomore who wasn’t supposed to live past the age of five: Inspirational story of Megan Crowley, the rare disease sufferer who was a special guest at Trump’s speech

A 20-year-old woman who was not expected to live past the age of five when she was diagnosed with a rare condition was a special guest at President Donald Trump‘s joint address to congress.

Megan Crowley, who was just 15 months old when she was diagnosed with a deadly muscle-weakening condition called Pompe disease, got a special mention during Trump’s speech on Friday night.

The President introduced Megan, who received a standing ovation, as ‘an incredible young woman’ who should ‘serve as inspiration to us all’.

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Megan Crowley who suffers from the rare condition Pompe disease was a special guest at President Donald Trump's joint address to congress
Megan Crowley who suffers from the rare condition Pompe disease was a special guest at President Donald Trump’s joint address to congress
The college sophomore was just 15 months old when she was diagnosed with the deadly muscle-weakening condition
The college sophomore was just 15 months old when she was diagnosed with the deadly muscle-weakening condition

Megan, from Princeton, New Jersey, was not expected to live past the age of five after being diagnosed with the inherited disease, which affects the ability of cells to break down the sugar glycogen.

The condition leads to progressive muscle weakness and the swelling of vital organs such as the heart, as well as serious breathing problems.

Megan’s younger brother Patrick was diagnosed with the same genetic condition shortly after, having been born just week earlier.

Devastated by the news that two of his children might only have a few years to live, the sibling’s father John desperately sought to find out more about Pompe disease.

This led to him founding the company Novazyme Pharmaceuticals two years later with bioscientist Dr William Canfield, which worked towards developing a pioneering enzyme therapy treatment for Pompe disease.

The firm was bought by pharmaceutical giant Genzyme for $137.5million, and a life-saving drug for the condition was produced.

Megan, from Princeton, New Jersey, (pictured aged nine with her mother Aileen and brother Patrick, then eight, in 2006) was not expected to live...