Magic and Memories for Maddie

My darling niece Madison has been diagnosed with Metachromatic Leukodystrophy (MLD) - a rare and devastating genetic disorder with no treatment. Most children who have symptoms at this age die around age 5. Madison turns 3 in a few weeks.

Madison has had motor problems for some time but this will worsen as things progress, and she will lose her cognition too. We aren't sure when, but sometimes this year is likely. At the end she won't be aware of what is happening, which is the darkest silver lining I've ever imagined, but it also means that in a way she will leave us twice. Maddie is an absolute firecracker and to know that we will lose her determination, her jokes, her joy and excitement, her obsession with Santa (she is her mother's daughter) is almost as unbearable as knowing that after that, we will lose her altogether.

There are no words that capture how horrendous this is. As a family we are beyond shattered. Courtney and Jordan are living every parent's worst nightmare, while still having to go through the motions of parenting two kids under the age of 3 who have no idea what's going on. Baby brother Joey is only 1.

Our job as a family is to hold Courtney and Jordan up, to give sweet Madison as much of this world as we are able and to endure whatever is ahead to give her peace and comfort as we carry her through. With Courtney and Jordan's (reluctant) blessing, I'm asking for support to help ease the financial strain so they can focus on what matters most right now