National Rare Disease Day is celebrated on February 29, and this year, Hopkins is hoping that the date raises awareness for the struggle faced by their family members.

At the age of 2, Erica and Philip Barnes' daughter, Chloe, was diagnosed with metachromatic leukodystrophy. Also known as MLD, the disease is an uncommon, degenerative genetic disorder that harms the central nervous system, and ultimately results into paralysis and death.

Chloe, at 2, still struggled to walk. Her parents felt the instinct that she was in pain when she started getting up a number of times every night.

They visited specialists at Children's Hospital Minnesota and Mayo Clinic, which resulted into the diagnosis. After diagnosis, Chloe lived for just six weeks and then lost her life after a stem cell transplanted to hold back the disease resulted into more complications.

Erica Barnes said, “You go from nightmare of not knowing to nightmare of knowing, to nightmare of knowing there’s nothing medical community can really do. She left us in arms surrounded by people that knew her best, not hospitals and not monitors, that is gift we were given”.

Erica received a gift the moment she realized her grief could bring something big in admiration of her daughter. Chloe's Fight Rare Disease Foundation approached from that crossroads to financially support U of M study on rare genetic childhood diseases.

On Rare Disease Day 2016, they've have taken an initiative to make the world know about ‘Wear Something Rare’ for awareness, with the help of the hashtag #WearSomethingRare2016 and by the sale of buttons.

The Barnes family has also played a role in launching Minnesota Rare Disease Day to be held on March 10 at the Minnesota State Capital. At the event, families and doctors will speak up with lawmakers.