There are more than 6,000 known #rarediseases. Sadly, 30% of affected children will lose their life before they are five years old.
This is Nate’s story. Jenna's firstborn son, who diagnosed with infant onset #Pompe disease in 2016. Tragically, Nate passed away before his second birthday. Jenna and her sister, Maddy are both now members of the Board of the Australian Pompe Association. They advocate for better access to diagnosis of childhood rare diseases through newborn screening programs.
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