After hearing about the magnificent castles, the lovely princesses and the amusement rides Pearl began counting down the days with anticipation.
Through the Make-A-Wish Foundation and with the help of volunteers Teresa Longwith and Pat Fuller, who has worked with the family for five months, the trip and all the magical Disney details were arranged.
“The talk about the castles and the pretty princesses there excited her but the talk about the airplane ride was just as exciting,” said her father, Paul Corder.
“Her eyes lit up when she found out she was going to fly there,” Fuller said.
“I think it is going to be a fun trip. I think the parade will be fun, and to wave at the people in the parade,” Pearl said.
Pearl was granted the wish because she has primary sclerosing cholangitis (PSC) or Walter Payton’s disease, and crohn’s disease. PSC is a rare liver disease which usually affects middle-aged men and is very difficult to diagnose, often progressing with no noticeable symptoms until it gets into the later stages. In 2007 she was diagnosed with her diseases.
Unfortunately, to date, neither PSC or crohn’s disease has a cure. Eventually the liver will be so damaged that the only treatment is a liver transplant, but that is still not a cure.
According to Fuller, PSC reappears in the new liver causing it to be damaged. The speed of progression differs from each patient but from diagnosis to the first transplant is about seven to 12 years.
The brave and strong little girl has overcome many obstacles. For as many complications and hospital stays as she has endured she is doing remarkably well. Medications help alleviate the discomfort and some of the symptoms while the diseases advance.
About the time the Corders were accepting Pearl’s diagnosis they were given another unfortunate diagnosis after a panel of testing at the Mayo Clinic was completed. Their newest addition to the family, Nika, had medium chain acyl-coa dehydrogenase deficiency (MCADD), a rare hereditary disease caused by the lack of an enzyme required to convert fat to energy.
Out of thousands of people who have someone in their family with an incurable disease, the Corders are dealing with two who are struggling with incurable diseases.
Nika, the younger sister who will be 3 in November, has the same disease and according to doctors it is progressing faster than her sister’s.
Pearl and Nika have an older sister named Eliza and an older brother named Elias. The four siblings are very excited about the Disney trip.
Their mother Jennifer is a busy stay-at-home mother who home-schools the children. It is her desire the trip will be full of joy for each of them.
“I hope my children experience a trip of no worries and just fun. When I went, I remember seeing the castle and getting a stuffed Dumbo which I later lost so I want to get another one,” said Jennifer.
Disney has a way of bringing out the kid in everyone. Even Paul, who has fond memories from his childhood visit to SeaWorld is enthusiastic about returning.
Make-A-Wish Foundation volunteers help with programs, activities and operations and supplement the salaried staff and by their time, gifts, talents or skills help the organization thrive.
The role of the Wish Volunteer is to make the dreams of children come true through creativity and imagination.
Fuller, who has been a Make-A-Wish volunteer for more than 10 years, emphasized how donations and frequent flier miles help make trips possible. She loves what she does and recommends others to consider becoming a volunteer.
“I used to think I did this to help other people. I soon realized I got more out of it than anybody else,” Fuller said.
Volunteers visit the family and interview the wish child in groups of two. The objective is to determine each child’s wish. It requires sensitivity, excellent people skills and dependability. For more information on volunteering or ways to donate, write to Make-A-Wish, 10 Willow St., Chattanooga, Tenn., 37404 or call 629-9474.