Financial assistance and resources from DSCC helped Payton’s family pay for modifications to their home and vehicle so he can stay active.

Eight-year-old Payton was born with a gene mutation so rare that it doesn’t have a name. The condition affects the STXBP1 gene and causes seizures, developmental delays, nonverbal communication and abnormal muscle movements.

“There are less than 250 people (with the mutation) that we know of worldwide,” Payton’s mom, Kristy, explained. “It is almost like a spectrum-type diagnosis… Doctors just don’t know much about it.”

What Payton’s family does know is that his symptoms are severe. He cannot walk or sit up and is nonverbal. However, he has no problem letting his happy, easygoing personality shine through. Payton loves his little sister, Hunter, and doing special extracurricular activities, like horseback riding and water therapies.

Kristy says the University of Illinois at Chicago’s Division of Specialized Care for Children (DSCC) has helped provide the accommodations, equipment and resources needed to help Payton stay active and comfortable as he grows.

Payton became enrolled with DSCC six years ago. His family qualified for financial assistance from DSCC to install a ramp in their home for Payton’s wheelchair.

“He’s getting bigger, and we were starting to have difficulties getting him in and out of our vehicle and his car seat,” Kristy said. “I contacted (our Care Coordinator) Beverly and she told me about the ways DSCC could help.”

DSCC was able to provide some financial assistance to modify the van with a lift, but the remaining price tag was still too expensive for the family to afford. Beverly then used her connections within the community to link Payton’s family with two charitable organizations to pay most of the remaining cost.

“Beverly went above and beyond,” Kristy said. “It’s been awesome. Now I can wheel him in and strap him down, and it’s so much easier without having to get him out of the chair and do multiple transfers.”

The modification helps the family of four’s busy lifestyle, especially now that Payton is in second grade and is increasingly involved in activities outside of the home.

Kristy said DSCC’s assistance and Beverly’s patience and hard work have helped make her family’s lives much easier. She also values Beverly’s knowledge of community resources and services and encourages other families to work with DSCC and ask what may be available to help their family.

“If Beverly wasn’t able to help with something, she can always point me in the right direction of where I could turn,” she said. “You just need to ask the question, and don’t be afraid to ask.”

 

DSCC families in need receive gifts and necessities from our generous community partners.

Partnerships are a crucial part of our mission to help children and youth with special healthcare needs connect to services and resources. For 80 years now, DSCC staff has developed relationships with social service agencies and community organizations across the state to help improve the lives of our children and families. During this holiday season, we are especially grateful for our community partners who’ve stepped up to ensure that some of DSCC’s neediest families have a merry Christmas.

In the Springfield Regional Office, Care Coordinator Robin Mahnken worked together with the Salvation Army in Jacksonville and her dedicated team of colleagues to deliver piles of wrapped presents for a sick 1-year-old in our program and her three siblings. The girl was born with Down Syndrome and a heart impairment that required surgery a few months later. In November, she developed an upper respiratory infection and was hospitalized and placed on a ventilator.

Robin has stayed in close contact with the girl’s mother since her admission to the hospital and learned the family is greatly strained financially. During the first week of December, the mother asked Robin to help find any available Christmas assistance for her children. Though the deadlines for many local charities’ assistance programs had already expired, Robin spoke with a director at the Salvation Army, who made arrangements for Robin to “shop” their facility for items on each of the children’s wish lists while the mother stayed at her daughter’s side in the pediatric intensive care unit.

“I anticipated receiving an article of clothing and one or two toys for each child.  I was overwhelmed by all of the gifts selected.  Volunteers called to me from every direction suggesting this or that for one of the children,” Robin said. “The director kept telling me I hadn’t selected enough.  I left with a carload of toys and clothing.”

With the mother in no position to wrap gifts at the hospital, Robin snapped photos of the items to show the mother and wrapped them herself. Robin saved the little girl’s packages to be wrapped by Springfield RO staff during their holiday party this week. Springfield RO members also donated funds to purchase a Walmart gift card for the family. Robin and her husband, with the family’s permission, delivered four huge bags of wrapped presents and the gift card to the appreciative family on Wednesday night.

At our Lombard Regional Office, staff members have developed a special bond with their building neighbor, Hope Fellowship. This bond was strengthened last year when Pastors Jeff Brewer and Jon Trott helped the office cope with the difficult loss of their assistant regional manager, who passed away unexpectedly in November 2016. The pastors’ support of the Lombard RO has continued ever since and earlier this month, Pastor Jeff asked Program Coordinator Assistant Kim Firkins if any DSCC families in the Lombard office’s coverage area need extra help during this year’s holidays.

Kim worked with the Lombard office’s managers and assistant managers to check with staff for families in need. Staff suggested a total of eight families, and Kim collected information about each family member and provided it to Hope Fellowship. Hope Fellowship’s parishioners purchased gifts for each family member. Their gifts include diapers, wipes, a homemade fleece blanket, pajamas, DVDs, gloves, hats and a generous assortment of gift cards for gas, groceries and various stores and restaurants. Hope Fellowship also provided stockings for each child and parent.

Kim coordinated the receipt of gifts, and Lombard’s Care Coordinators are delivering the items to the families.

Further north at our Rockford Regional Office, a Care Coordinator learned that a toddler was being discharged from a transitional care facility earlier this month after being separated from her family for a year.

“This little one became part of a bustling home of five brothers and sisters who were overjoyed to welcome her home,” her Care Coordinator Shan Johnson said.

On Dec. 14, the toddler’s mother told Shan that she had no Christmas presents for the children.

Shan contacted the Rockford Salvation Army, who “without hesitation” opened their doors for Shan and let her into their warehouse on a Sunday afternoon to handpick gifts for the children. They even provided gift bags.
“I will never walk past a (Salvation Army) red kettle again without thinking about this happy miracle,” Shan said.

A big thank you to these organizations, our staff and all of our community partners for their support and service to our families throughout the year!

Miguel and Carlos spend time with Club America soccer team, thanks to their DSCC care coordination team.

One of the main ways that UIC’s Division of Specialized Care for Children (DSCC) helps children with special healthcare needs and their families is through a process called care coordination.

Our care coordination addresses each child and family’s unique needs. It can include helping a family understand their child’s diagnosis or connecting a family in need of financial assistance with the right resource. Sometimes, our care coordination involves providing experiences that simply help a special needs child be a kid.

A care coordination team from DSCC’s Chicago Core Regional Office recently used their creativity to provide one such priceless experience to two brothers with muscular dystrophy.

Miguel, 17, and Carlos, 14, are big soccer fans who live near Toyota Park in Bridgeview. The park hosts major league soccer games with players from around the world, and the teens had hoped to meet the Mexican soccer team Club America.

Miguel and Carlos’ mother reached out to their Care Coordinator Rita DeSoto and Program Coordinator Assistant Maria Carrera to see if they could help.

Maria invited their mother to the Chicago Core office to sign authorizations so she could contact the team’s marketing and promotions manager on her behalf. Rita was able to reach the manager two days before the game and with the family’s permission, wrote a letter detailing Miguel and Carlos’ condition and why they wanted to meet the team.

Thanks to Rita and Maria’s efforts, the teens were able to meet the team and take photographs and collect autographs from their favorite players. Their mother reported that they were “surprised, grateful and overjoyed.”

“Each day freedoms such as walking, running, playing, laughing, eating and breathing can be taken away from children with muscular dystrophy,” Chicago Core Regional Manager August Nall said. “The Care Coordination team communicated the family’s needs at the right time to the right people and they were able to secure a service the family wanted.”

Great work, Rita and Maria!

DSCC Care Coordinator partnered with Mount Vernon Lion’s Club to make the gift a reality.

Fifteen-year-old Allie Riley of Mount Vernon wanted a bicycle of her own so she could go on rides with her family and friends. A traditional bicycle, however, was not a safe option for Allie as she is visually impaired and has problems with her depth perception.

Allie’s mother, Melinda, did some research and found some tricycle options for Allie but couldn’t afford the price tag. Melinda went to the family’s Care Coordinator, Donis Vail, from the University of Illinois at Chicago’s Division of Specialized Care for Children (DSCC) for help.

Allie has been enrolled with DSCC since she was an infant. Donis, who works in DSCC’s Olney Regional Office, used her community connections to find funding for the tricycle and pull off a sweet surprise for Allie.

Knowing that Allie is a big fan of musician Jimmy Buffett, Donis found a Buffett-themed adult tricycle that’s cream with green tires, a green seat and a parrot-shaped bike horn. She then started researching funding options. When she reached out to the Mount Vernon Lions Club, they offered to pay the entire cost of the tricycle.

Donis and the Lions Club then invited Allie and Melinda to the club’s meeting last month to surprise her with the tricycle. Melinda told Allie that they were going to a bank meeting so she wouldn’t suspect.

When Allie arrived and saw her new tricycle, she was “over the moon,” Melinda reports. Allie also immediately stipulated that her new wheels are not merely a tricycle but a “beach bike.”

Our Care Coordinators are pros at identifying a family’s needs and working with local community organizations to connect the family and youth with the services and resources that can help. The Mount Vernon Lions Club’s generous donation is a wonderful example of these connections and how much they benefit our participants.

A huge thank you to all involved, and happy riding, Allie!