MONTICELLO – A Monticello High School freshman is taking it upon herself to help a family affected by a devastating disorder.
Fourteen-year-old Elizabeth Miller is organizing Splash for Niemann-Pick, a fundraiser designed to raise money for Monticello resident Jane Gillespie's three grandchildren, all of whom have been afflicted with the cholesterol-storage disorder. The neurological, degenerative disease affects a child's ability to speak and is normally fatal before or during adolescence.
Gillespie's daughter, Julie Smith, a Monticello High School graduate who now lives in Indiana, has already lost one child, Braden, 10, to the disorder. Two other children, Riley, 11, and Keaton, 9, also have Niemann-Pick; 17-year-old Chandlar is not affected.
Miller went to day care at Gillespie's house and grew up around Smith's three children. When she heard of their affliction, she decided she wanted to help.
"Jane has always talked about the pool and how the little boy likes it," Miller said.
That was the impetus for the fund raiser, a large pool party scheduled for 8 to 10 p.m. Sunday at the Monticello Family Aquatic Center. Treats by Pies by Inge as well as a DJ will be at the event. The party is open to the public and donations will be taken at the door.
Gillespie said only 1,500 children in the world have the rare genetic disease, so not many fundraisers are held for it. That makes Miller's fundraiser that much more special.
"Not very much is done for it. They (the Miller family) are very special people and this shows how special (Elizabeth) is," said Gillespie.
Miller said all money raised from the event will be donated to the Smith Family BReaK Thru Fund, which is then donated for medical research to find a cure. The B, R and K stand for Smith's three children, Braden, Riley and Keaton, who have been affected by the disorder.
The event has been organized by Miller, with some ideas from her parents and Gillespie, a fact that makes her parents very proud.
"She originated the idea and followed through with it from beginning to end," mom Robinette Miller said.
To make a donation, send checks payable to Smith Family BReaK Thru Fund to c/o Elizabeth Miller 12 Prairie Acres, Monticello, IL 61856.