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Maryland Fact Sheet

The Sullivans lost their first child and only son, Daniel Sullivan V, when he was just 7 years old, ending a generational legacy for the Sullivan family name. He passed away from a rare neurodegenerative condition called metachromatic leukodystrophy (MLD).

It all started when Daniel started having trouble sitting up. He was originally misdiagnosed with Charcot-Marie Tooth syndrome (CMT). But his symptoms started progressing too rapidly and in a manner that didn’t quite fit with CMT. An MRI revealed white matter damage in Daniel’s brain that resembled leukodystrophy. When Susan and Dan went to visit Daniel after his MRI, the medical staff had tears in their eyes – never a good sign. Susan and Dan were absolutely devastated to learn their only son had a terminal illness, MLD.

They knew they wanted to spend as much time with Daniel as possible before he got sicker. His Make-A-Wish trip led him to play with awesome robots at Innovation First Labs. He braved roller coaster rides at Disney. His sister absolutely adored him. Daniel was fearless, kind to other children, and had a positively infectious joy.

Daniel’s death was particularly hard not only on his parents, but also on his sister. For Susan, one of the hardest things is seeing other families being diagnosed and knowing what they have to go through.


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