Emily’s Show must go on

For an 11-year-old girl with an incurable disease, she continues to live by a simple phrase she learned while attending St. Joseph Catholic School — “The show must go on.”

On Saturday, Emily Rose Fisher, who now lives with her parents in Florida, appeared in Wapakoneta at a fundraiser in her honor to thank those who are helping for being so generous. For her to make an appearance at the Wapakoneta VFW was important to her, her parents said, because “the show must go on.”

“It is a blessing and it is amazing to us the generosity of the people that are here,” Emily’s mother Sarah Fisher said, explaining the money helps to defray Emily’s medical costs. “It is just amazing to know that people care as much as they do.

“There are so many people here we have never met before and their love and kindess is overwhelming,” she said.

“We are just so extremely grateful for all of it.”

At the age of 4, Emily was diagnosed with a rare autoimmune deficiency disease known as autoimmune polyendocrinopathy-candidiasis-ectodermal dystrophy, or (APECED)-type 1. When she was diagnosed, there were only 54 cases of type 1 known worldwide and fewer than 50 cases in the United States. Today, there are still fewer than 100 cases in the United States.

Her parents first noticed something was wrong when she was an infant because she started having symptoms of thrush. She then began to lose her fingernails and started having pancreatic issues. Her parents, Sarah and Brian Fisher, took her to Nationwide Children’s Hospital in Columbus for treatment, where they learned of her condition.

APECED causes the immune system to attack and weaken the organs within the endocrine system. To date, Emily suffers from pancreatic insufficiency, parathyroid deficiency, type 1 diabetes, growth hormone deficiency, adrenal insufficiency and has nephrocalcinosis of the kidneys, respiratory system and liver.

Last year, Emily was in the hospital for 136 days. Her treatment includes taking nearly 50 pills each day and she must use a feeding tube.

Three years ago, Emily and her family lived in Wapakoneta when she was granted her wish by the Make-a-Wish Foundation for a trip to Hawaii. Her parents noticed she responded well to the warmer temperatures and they decided as a family they may have to make a change.

“We noticed the warm air made her feel better, so after a lot of prayers we decided to do what was best for her,” Sarah said. “The doctors told us to do what we felt was best for her and what would make her happy and within three months we moved to Florida.”

Brian Fisher, who served years as the Auglaize County computer operations manager, moved his family to Florida. It was a big move. Brian and his wife grew up in Wapakoneta.

Emily started seeing physicians at several hospitals including the Arnold Palmer Hospital in Florida along with one in Cleveland and one in Washington, D.C. She visits the Arnold Palmer Hospital at least four times a week.

While battling her own disease, Emily wanted to provide a little ray of hope to others.

In 2011 before her 10th birthday, Emily told her mother she had grown tired of wearing “itchy, scratchy” hospital socks and wanted to do something for others on her birthday.

“We were coming back here for her birthday party and we were expecting more than 100 people and she said, ‘Can you tell everybody to omit gifts’ and I said, ‘Yea, but do you not what that means,’ and she said, ‘I do, I don’t want any gifts,’ ” Emily’s mother said. “She said, ‘Mom, you told me to do things for others and I am tired of wearing the itchy, scratchy socks and I want to deliver slippers to the hospital.’

“So on her birthday she received 300 pairs of slippers and we delivered them to the different hospitals,” her mother said. “This year, she turned 11 and for her birthday she wanted to deliver slippers to 111 hospitals.”

To reach the goal, they now deliver to an average of nine hospitals and Ronald McDonald houses every month.

Her foundation is called, “Emily’s Happy Feet,” and all the slippers are “happy,” her parent said. On Saturday, a large 3-foot square box, 5-feet tall was filled with slippers with characters from movies and shows on them.

“One thing is we want to keep her positive and let her know that she can accomplish anything that she puts her mind to,” Sarah said. “It means so much to us to keep her grounded and to pay it forward as much as we can.”

The family plans to deliver slippers to seven hospitals in the St. Louis area and then when they return to Florida, they will deliver slippers to 10 more hospitals.

On days like Saturday, Emily, who has soft and deep brown eyes and shoulder-length brown hair, struggles at times to comprehend the spirit of giving she encounters, her mother said.

“She cries and she wants to know why these people do so much for her and we tell her it is because they love you and they understand what you are doing for others,” Sarah said. “They just want to help you pay it forward and she understands a little because at night time during prayers she will thank God ‘for others helping me to help others.’ ”

Emily also has inspired other girls in Florida to forego their birthday presents to donate slippers to Emily’s cause and several businesses, such as Chick-Fil-A and Morgan and Morgan.

The Fisher family also used the time Saturday to thank the people, but Brian said it is hard to talk to everyone while they are back in Wapakoneta for such a short time. He stressed they really do appreciate everything they do for them.

Fisher is the son of Bev and Dave Fisher, and Sarah is the daughter of Michelle and Rob Huebner and John Cosgrove.    

“All of the family has helped so much and this was something we were called and told was going to be held and we were so thankful for it,” Brian said. “We are so thankful for our family and friends who provide us with so much help from this and they are so great to be here to support us and that what means so much to us.”

“We are so thankful for all of this and we want to thank everybody because it has made such a huge impact,” Sarah said, noting Betty and Tom Welsch organized the fundraiser. “It has made such a huge impact knowing that she can get the medical care that she needs.”

The prognosis for Emily is still dim, her parents said, although they hold out hope for a cure.

“It is one of those diseases where you treat all the symptoms right now and we are working with some of the doctors, not just in the United States but from everywhere, and they are doing research and they are just trying to help,” Brian said.

“When she was diagnosed, the prognosis was age 13 and she is now 11,” Sarah said, tears filling her eyes and streaming down her face. “We are working so hard and we just want to do everything in our power to know at the end of the day that she is happy.”

After a long pause with tears streaming, she says, “Because the show must go on.”