South Bend family raising awareness for rare diseases
SOUTH BEND, Ind. -- February 28 is Rare Disease Day and one Michiana family is sharing their son’s story to highlight the impact a rare disease can have on its patients and their families.
One in 20 people suffer from one of the 6,000 diseases classified as rare.
South Bend toddler Nolan Zent is one of them.
Sheena Zent describes her one-and-a-half year old son as a happy-go-lucky toddler who loves to play peek-a-boo and listen to stories.
“He is probably the sweetest little boy I’ve ever met,” said Sheena. “He is usually always happy.”
Despite is big smile, Nolan is battling Menkes Disease, which is a rare and fatal childhood genetic disease.
“We’ve kind of been on a little roller coaster of trying to maintain his health, make sure he’s comfortable,” said Zent.
According to the National Institute of Health, Menkes affects 1 in 100,000 newborns. Children don’t produce enough copper which leads to developmental delays and other symptoms like light-colored, kinky hair. Children battling this disorder usually don’t live past their third birthday.
Sheen said she and her husband noticed Nolan’s dark hair turning white when he was three or four months old. He also missed other developmental milestones.
They took Nolan to a pediatric dermatologist, who diagnosed Nolan with Menkes almost a year ago. Sheena said the diagnosis crushed her family.
“The disease renders him unable to have the strength to hold his head up, to walk, crawl, he can’t talk, he can’t eat by mouth, it affects every cell in his body,” said Sheena.
She said their family has spent the better part of this past year in the hospital.
In a FaceTime interview from a hospital in Chicago where Nolan is at now awaiting some tests and possible surgeries, Sheena said the rare disease has had a huge impact on their family.
“You just never know from one week to the next if we’re going to be at home, if he’s going to be having a good week [or] is he going to be in the hospital like now,” said Sheena. “We definitely did not anticipate this, so with these rare diseases it is hard and the kids that are medically fragile, you just never know how they’re going to react.”
She said his older sister can’t play with him the way other siblings play together and regular tasks like bathing are challenging.
Sheena hopes her son’s story helps others understand the impact of rare diseases.
“It wasn’t until Nolan had a rare disease that I started connecting with families and realizing how many people are actually touched with you know rare diseases,” said Sheena. “Just kind of be thankful for what you have, and be thankful for what you’re given, and what your children can do. I just think you know coming together and being kind for other people and listening and being supportive it’s just an important message all the way around.”
Sheena says support from other rare disease families and community organizations like A Rosie Place keep Nolan and her family fighting.
“Every year that he is with us, it’s just a blessing and ... he’s fighting so we’re all going to keep fighting for him, doing whatever we can,” said Sheena.
The Zents are hosting “Nolan’s Menkes March” on June 8th, 2019 at Potawatomi Park. All proceeds will benefit A Rosie Place.
For more details or to register for the march, click here.