Children’s Mercy Emerson’s Story

Attendees at this year’s Red Hot Night gala rallied together to support research at Children’s Mercy for kids like Emerson, who is battling Niemann Pick Type C (NPC), a rare, progressive genetic disorder.
Sweet, spunky and hopeful Emmy, whom her parents call “the rarest princess,” is just 3 years old and already battling for her life. NPC will lead to the loss of function: the ability to talk, walk, eat and much more. It is a fatal neurodegenerative disorder.
Destiny and Nick, Emmy’s parents, worked tirelessly to find someone who could help their daughter. They found that help in the form of Dr. J.B. Le Pichon and his team in neurology who have been involved in a clinical trial treatment for NPC. Every two weeks, Emmy comes in for a special treatment to help keep her disorder from progressing in the hopes that research can catch up and find a cure. Emmy loves to play games with her favorite nurses, Anna and Misty, and have her nails done as she waits for the bi-weekly procedure, which requires a lumbar puncture and general anesthesia.
This year’s Red Hot Night gala once again shattered previous records, raising more than $2.4 million to support Children’s Mercy and attracting 1,600 guests and more than 50 volunteers, many of whom were staff members, on Saturday, Feb. 15, 2020 at the Kansas City Convention Center Kay Barnes Grand Ballroom. The net proceeds from the event will support research at Children’s Mercy and the Children’s Mercy Research Institute. Becoming a research enterprise is a goal originally put forth by our founders. Today, philanthropic support fuels the discovery of answers, treatments and cures for children like Emmy.
Learn more about Ways to Give at childrensmercy.org/helpkids.

[@captainrahil2446]

Any treatment is there regarding Nieman pick dieses AB

[@TyrekeCorrea]

The thumbnail for this video does kind of make it seem like there was something wrong with Emerson.

[@meganthursby2002]

Ik