Four-year-old Creed Mattingly is living with pompe disease, a rare condition that prevents his body from properly digesting sugars. Because of this, he has to use a g-button to receive nutrients, he has i-weekly procedures to flush his system of sugars, and is injected with the enzymes he needs to survive.
Creed recently got the opportunity of a lifetime when he was granted his wish to meet Mickey Mouse in Disney World.
Creed, his parents Jenae and Robbie Mattingly, and Creed’s nine-year-old sister all got to enjoy the trip in April courtesy of Wishing Well Texoma.
According to the National Institutes of Health website pompe diseases is rare, affecting one in 40,000 births. The website says the disease is often fatal with a life expectancy of early childhood for most. Mattingly said the doctors told her initially her son wouldn’t live past one. She said getting to meet Mickey Mouse was a big joy for him, she said Creed ran into the arms of the character when he met him.
He can walk, with the help of leg braces, but he doesn’t have much muscle strength his mother, Jenae Mattingly said.
“He is a typical four-year-old,” Jenae Mattingly said. “He loves the iPad, specifically YouTube Kids. He loves the outdoors. He has a funny sense of humor. Sometimes it seems a little beyond his years. He also makes us laugh with the little things he says.”
She said he really admires police officers. He was added to the Bells Police Department as an honorary officer. Jenae Mattingly said he has his own badge and patch and runs around pretending to arrest people.
Creed struggles with everyday things like breathing and sitting. His joints and muscles are weakened because of the condition. He needs braces in order to walk. His mother said he can eat but he sometimes chokes on certain foods. He fatigues easily and burns calories quickly. Despite all that his mother said he is a happy kid.
Mattingly said she heard about Wishing Well through Creed’s occupational therapist. When the family found out his wish was going to be granted, they were very excited.
“When Creed was diagnosed at 10-months old everyone asked us what motives him, what makes him happy,” Janae Mattingly said. “Mickey Mouse was the only answer he would give. Anything to do with Mickey Mouse he adored. We started collecting toys of the character. He never had seen a life-sized Mickey before we went to Disney World. When we explained to him there was a real-life Mickey that got him excited.”
She said her and her husband kept it a surprise from the kids. They had someone dress up in a pizza delivery outfit and deliver a pizza shaped like Mickey Mouse with the notice.
“It was a humbling experience,” Mattingly said. “You get very excited but overwhelmed with joy your family gets to have this experience. It is a reality check as far as the reason behind the trip which is why it is so meaningful. We are honored to be granted the wish by a local organization that now gets to be a part of our family. We are exited to be able to be in the Wishing Well Family, to help out with fundraisers. They gave us a wish of a lifetime.”
She said since the trip in April it’s all Creed talks about.
Creed still has to receive enzyme replacement therapy every two weeks. He also has a nine-year-old sister names Macie who adores her baby brother.
“From a mom’s standpoint it is a hard life,” Janae Mattingly said. “I have to deal with a special needs child. We’re flooded with therapy appointments and doctor appointments. He does go to school, he is in pre-K. It’s hard overcoming those obstacles. For us it is a part of our every day life. We cherish every minute with creed. We weren’t promised he would be with us after a year. They told us he wouldn’t make it past that.”