Apart from nurturing and giving a child unconditional love, mothers must be their child’s biggest advocates, a responsibility Mothers of Miracles (MOMs) takes very seriously. THE GROUP was started in 2011 by Skahan in search of mothers who were going through similar challenges. THE WOMEN share one mission but their stories are all different. CHURCH and her husband Travis are the parents of Theo, five years old, who was diagnosed with Caudal Regression Syndrome (CRS). NICHOLAS is the mother of Aliyah. At eight and half months old, she is the youngest of all the children and the only girl. During an ultrasound they found Aliyah had hydrocephalus, meaning she had fluid on the brain. BOTTS is the mother of Kason, one and a half years old. Through process of elimination, Kason was diagnosed with Prader-Willi syndrome, a rare genetic disorder, on day 12 of a 28-day stay in the neonatal intensive care unit at Children’s Mercy in Kansas City. SKAHAN is the mother of Mason, three years old, who was diagnosed with Pitt-Hopkins syndrome, a genetic disorder of the 18th chromosome. DESPITE challenges in their lives the MOMs said they wouldn’t change a thing. THE WALK will go forward rain or shine. The MOMs are hoping for a sunny day but if it’s dreary the walk will be moved inside the Community Recreation Building.
MOMs is a group of five women, Lesley Skahan, Kelci Botts, LeAnn Church, Amy Welch and Tara Nicholas, who share one major thing in common; they are all mothers of special needs children.
“You have to fight for your kid,” Welch said.
Fight for their children is exactly what these women are doing. April 6 the MOMs are holding the inaugural Stroll and Roll, a 3K walk at Riverside Park.
The walk will begin at 11:30 a.m. with registration beginning at 10 a.m.
“It’s not a competition,” Church said. “It will be a leisure walk, or stroll and roll, up to 3K. People can walk however long they want.”
The walk is designed to bring awareness to area community members who might be in the same boat as the MOMs and to celebrate their children.
“Some of our children can’t do sports and activities, this is their time to shine,” Skahan said.
“It’s about celebrating their abilities instead of labeling them as special needs,” Church added.
Each of the mothers will have their child’s miracle story posted for walkers to read. Other parents with similar stories are welcome to send in their stories, which can be emailed until April 3 to [email protected].
They meet once a month for a mommy’s night out. They rotate homes and meet for dinner.
“Our mom’s night out is our time away,” Skahan said. “We eat dinner and end up talking about our kids.”
The MOMs participated in a walk similar to the Stroll and Roll in October and were so impressed by the event they agreed to bring it to their local communities.
Welch is the mother of Kooper, two and a half. He was born premature at 25 weeks due to pre-eclampsia. Kooper wasn’t Amy and her husband Scott’s first child.
In 2009, Amy gave birth to a baby girl Kalli who was born premature. She weighed only 1 pound, 3 ounces and fought for five days until she contracted a deadly bacteria.
When Kooper was born he weighed 2 pounds, 1 ounce and was diagnosed with pulmonary hypertension in his lungs. He spent 110 days in the neonatal intensive care unit.
“When he gets a cough it can quickly turn serious with numerous hospital stays,” Welch said. “The doctors keep reassuring us that he will grow out of his lung issues with minor complications in the future. They both are miracles. Kalli is definitely her brother’s guardian angel.”
Kooper has been receiving speech therapy for the past year.
“He is missing a large part of his spine. He has a single lung and kidney. He doesn’t walk; he doesn’t have movement in his legs, but he doesn’t let that slow him down,” Church said.
Church said Theo’s challenges are physical and not developmental. He is healthy and has always figured out how to accomplish what he wants to do, just in a different way.
“He is smart, sometimes too smart and opinionated,” Church said.
Most important to Theo is his best bud and biggest fan, his seven-year-old brother Trevor.
She had a shunt put in place but a few months after birth, Aliyah’s eyes were roaming. Only recently they found out Aliyah has Walker-Warburg syndrome, a rare and the most severe type of congenital muscular dystrophy.
Aliya has a life expectancy of three years. Nicholas and her husband Quinnton have created a bucket list for her so she can experience as much as possible.
Kason wouldn’t eat for the first 48 hours. It is difficult to get children to eat during infancy with Prader-Willi. Therefore he is on a feeding schedule where he eats every three hours.
“We monitor and journal everything he eats,” Botts said of her and her husband Jason. “At ages four to six it will switch and he will likely battle obesity the rest of his life.”
Each night Kason has to take a hormone growth shot which he will continue until possibly age 25.
He also does regular physical therapy due to low muscle tone, occupational therapy as well as speech and language therapy.
Kason has a high arched pallet making it difficult to form words so he knows sign language, which is also good physical therapy for his fingers and helps reduce his frustration with his communication.
“It is really rare. Mason is one of 200 kids worldwide that has been diagnosed,” she said.
Because it is so rare there is still a lot of research being conducted. Mason has given blood and skin samples to help with research.
He is not able to walk, a condition Lesley and her husband Matt hope Mason will eventually be able to overcome.
Mason has some gastrointestinal issues, but research has shown that most kids seem to outgrow those issues.
Mason loves music and is fascinated with water. Skahan said one of his favorite things is bath time. Mason’s care includes a lot of speech, physical, occupational, pool and hippotherapy.
Though Mason cannot talk he does understand.
“That’s how we know he has a voice inside,” Skahan said.
“God wouldn’t give us more than we can handle,” Botts said.
The MOMs admit it isn’t always easy, but their challenges have made them better mothers and better people.
“It has made me a better person. I am a lot more patient,” Botts said.
One thing the MOMs don’t want is sympathy.
“A lot of people will come up to us and ask us ‘how do you do it? And say I’m so sorry.’ Don’t say sorry. We love our kids to be recognized,” Church said.
The MOMs also said their husbands are their backbones.
“The dads really don’t get enough credit,” Skahan said.
Booths set up at the walk will contain information about a variety of services available to parents of children with special needs.
The women and children have all utilized the program Birth to Three, also known as Infant Toddler, through Greenbush Southeast Kansas Education Service Center.
The program, free of charge, is a family-centered early intervention program with the primary purpose of helping families whose children have developmental delays or disabilities.
The women learn about programs, similar to the Birth to Three, and other programs from each other and want to share some of their findings.
Church said a main focus of the walk is to have resources and educational materials available for families and community members who might be unaware of some of the support systems available.
There will be live music, kids’ games, crafts and a donation lunch. Sloppy Joe’s and hot dogs, drinks and desserts will be available. Free will donations are requested.
All proceeds will go to supporting programs and families of special needs children in the local and surrounding communities.
They are looking for volunteers to help work the walk.
Registration forms can be found at Class Act Salon, Iola Vision Source, Allen County Endowment office at Allen Community College, Farm Bureau in Yates Center, the Feed Bunk in Yates Center, Stacey Cakes in Humboldt, Hairbenders in Yates Center and the Back Forty in Moran.
Shirts can be purchased for $10 for kids and $15 for adults. Applicants can also register by email at [email protected].
MOMs advocate for special needs
