Makenzie Hardesty continues to thrive while living with a rare terminal disease.

Like many mothers on graduation day, Andrea Lancaster cried tears of joy as she watched her daughter Makenzie Hardesty receive her high school diploma.

It’s a milestone that once seemed out of reach.

The 18-year-old Normal Community West High School student has mucopolysaccharidosis (MPS) type VI. It’s a rare terminal illness that affects many organs and body functions. Her younger sister Isabella has the same disease.

Makenzie Hardesty and her younger sister Isabella both have mucopolysaccharidosis (MPS) type VI.

“Quite honestly, I didn’t expect them to live this long. At first I was told age 5, and then it was 13 and then it was, ‘We don’t know,’” Andrea said of her daughters’ prognosis. “We’ve been doing a lot to make sure they can stay here as long as possible.”

For Makenzie, these efforts meant numerous childhood surgeries and 12-plus years of lengthy enzyme replacement therapy treatments each week.

Through it all, she continued to work hard and balance school work with her medical demands.

She graduated May 25. Two local television stations covered her story.

“Do the best you can”

Makenzie said her mantra has been, “do your work and do the best you can, always.”

It’s a simple work ethic that can provide hope to many living with rare and terminal diseases.

“Something I want more people to see is that Makenzie and Bella are still living and striving with MPS, even later on in life than what was expected,” Andrea said.

MPS Type VI is a lysosomal storage disorder. Makenzie and Isabella lack an enzyme needed to break down a certain form of sugar, so it builds up in the body. For the Hardesty sisters, it affects their airways, eyes, hearing and joints. It also causes small stature.

Makenzie Hardesty with her family: stepfather, Chris; mother, Andrea; younger sister, Isabella; and youngest sister, Kaylee.

Makenzie has had a tracheostomy tube since she was 6 years old and needed in-home shift nursing for most of her life. She’s been enrolled with the University of Illinois at Chicago’s Division of Specialized Care for Children (DSCC) for 13 years.

Both she and Isabella undergo enzyme replacement therapy treatment at Children’s Hospital of Illinois once a week for about six hours to help combat the effects of their illness. The lengthy treatments meant she missed one day of school each week.

Makenzie says she would get her homework assignments the day before her therapy treatments. While receiving her therapy, she’d work on schoolwork with a teacher from the hospital’s pediatric school.

“I’m very proud of her,” Andrea told WICS ABC Newschannel 20. “No matter what surgery she’s had, no matter what she’s been through, she did it with A’s and B’s and no missed assignments.”

“You can make it”

As tough as living with MPS Type VI can be, Makenzie said her condition could be much worse, so she tries to focus on what she can do.

“I don’t let that affect me because I do stuff that I like to do, and I don’t let my disorder get to me,” she told WEEK 25 News.

During high school, Makenzie discovered a love of photography. She’s now looking into photography courses through the New York Institute of Photography.

Makenzie’s current doctors say she still needs 24/7 care from a shift nurse and/or family member due to her tracheostomy tube. However, Andrea said her daughter has become much more stable and less dependent on her trach.

Makenzie Hardesty poses with the award she received during Senior Awards Night.

The family is working with their DSCC Care Coordinator to transition to an adult pulmonologist who could help Makenzie reach her goal of becoming more independent in her care.

“I want to give her space to be an adult,” Andrea said.

She and Makenzie are also working with DSCC and the Department of Human Services to find out what adult services are available as she navigates life post-high school.

Makenzie encourages other DSCC participants who are starting high school to not be shy and use their voice to speak up or ask a question.

She also stresses the importance of hard work and perseverance.

“I didn’t think I was going to get through it but I’m like, ‘Hey, I’m done. I passed a milestone.’ So if you’re fighting through something, you can make it,” Makenzie told WEEK 25 News.

The Seizure Smart School Act requires seizure action plans for students and training for school staff.

A new law aims to help schools better support the needs of students with epilepsy.

All Illinois school staff must be trained in seizure first aid under the Seizure Smart School Act.

The act, which was signed into law this month, takes effect July 1, 2020.

The law also requires parents of students with epilepsy to submit a seizure action plan to their child’s school.

Illinois is now one of four states to pass Seizure Safe School legislation, according to the Epilepsy Foundation of America.

“Each year, the University of Illinois at Chicago’s Division of Specialized Care for Children (DSCC) serves hundreds of Illinois children with some form of epilepsy,” DSCC Executive Director Thomas Jerkovitz said. “Our staff is ready to partner with parents and school personnel to make sure these children stay safe and well-supported throughout the school day.”

Under the law, a seizure action plan describes the services that a student with epilepsy needs at school and at school-sponsored activities. It should include instructions from the child’s healthcare provider and a copy of any prescriptions and how to give them to the student.

The plan also identifies a “delegated care aid,” who is a trained school employee who can help the student with their seizure action plan.

Families of children with epilepsy who are DSCC participants can talk to their Care Coordinator for help putting together a seizure action plan.

DSCC Care Coordinators can also attend school meetings with families to make sure their child’s educational, social and medical needs are being met.

The Seizure Smart School Act also requires all school employees to complete seizure recognition and first-aid response training.

Read the full text of the law for more details.

The Epilepsy Foundation of America states that about 500,000 children – approximately six in 1,000 – live with epilepsy and seizures. It is the fourth most common neurological disorder in the country and is characterized by recurrent and unpredictable seizures that affect a variety of mental and physical functions.

Original drawings will be featured in DSCC’s new collection of greeting cards.

Calling Illinois artists of all ages!

The University of Illinois at Chicago’s Division of Specialized Care for Children (DSCC) is seeking artwork for our collection of greeting cards. The cards will be sent to our participants, providers and community partners.

Who is eligible?

The contest is open to Illinois residents of all ages. Artists can choose any or all of the six greeting card templates and illustrate what each theme means to them. Creativity is encouraged!

Each template is two pages and includes a release for parents and/or youth ages 18 and older to sign. A signed release must be submitted with the artwork in order to be entered into the contest.

You may click on each template link below to print them out and personalize:

• Congratulations
• Get Well
• Happy Birthday
• Happy Holidays
• Thank You
• With Sympathy

You may also call DSCC at (800) 322-3722 to have templates sent to your home.

How to submit:

Artwork and a signed release should be submitted to DSCC by Sept. 15, 2019.

Mail to:

UIC Division of Specialized Care for Children
3135 Old Jacksonville Road
Springfield, IL 62704
Attention: Amanda Simhauser

OR

If you are a DSCC participant, you can give contest submissions to your Care Coordinator.

Selection process:

Each submitted drawing will be posted on DSCC’s Facebook page .

Drawings that receive the most “likes” by Oct. 15, 2019, will be considered for the greeting cards. Be sure to visit our page, vote and share!

The greeting cards will be given away for promotional purposes and will not be sold. Winners will have a set of greeting cards mailed to the address provided.

Families gain knowledge, resources and friendships during the 2019 Institute for Parents of Preschool Children who are Deaf or Hard of Hearing.

When Leticia Hubart learned about the Institute for Parents of Preschool Children Who Are Deaf or Hard of Hearing, she knew she must attend.

Her 4-year-old son, Liam, was just diagnosed with hearing loss in December after showing behavioral issues.

“Hearing loss was not on my radar. I dove right into educating myself,” she said.

Leticia, Liam and his big sister, Teagen, traveled from Rock Island to the Illinois School for the Deaf campus in Jacksonville to attend the Institute. They joined 33 other families from across the state for the weeklong program from June 9-14.

“It’s changed my world,” Leticia said of the experience. “It opened my eyes to the diversity of hearing loss. It’s not a doom-and-gloom kind of diagnosis. He’s going to be OK, and I’m going to be the best advocate I can be for him.”

The Institute provides support and valuable information on communication options, language development, amplification, social-emotional development and school programs. There is no cost to participating families.

A common link

UIC’s Division of Specialized Care for Children (DSCC) supports the Institute, along with other sponsors.

This year’s Institute was the largest on record, with 34 participant children enrolled and a total of 119 people attending from 31 families.

Participating parents attend daily lectures by experts in the field to learn about raising a child with hearing loss.  Lecture topics include:

• Child development
• Types of hearing loss
• Language development
• Communication choices
• Assistive communication devices
• Deaf culture
• School programming

Other activities include meeting in small groups to discuss specific concerns and connecting with other caregivers. Parents are also able to have a night out together without their children.

An American Sign Language instructor teaches parents during the 2019 Institute for Parents of Preschool Children Who Are Deaf or Hard of Hearing.

During the Institute, children attend classrooms based on their age group. Experienced teachers of children who are deaf or hard of hearing oversee these classrooms.

Attending children have the opportunity to receive hearing, vision, psychological, speech, language and educational evaluations as well as play with other children who have a hearing loss.

Their siblings are also welcome to attend and participate in fun and educational activities, including art projects and learning to sign. This year’s sibling program had 30 children.

There is no cost for families to participate, and meals and housing are provided at no charge.

“I am very delighted that one common link that each of these families share is that each one of them is a DSCC family. I am so thankful to our DSCC staff for the extra work that was involved in getting each of these families ready for this weeklong experience,” DSCC Family Liaison Violet Wiker said.

A community ready to help

T.J. and Brianna Taylor of Macomb attended the Institute with their 11-month-old daughter, Larkin.

Larkin’s newborn hearing screenings were positive, suggesting she may have a problem hearing. She then underwent an Auditory Brainstem Response (ABR) test. She was diagnosed with bilateral sensorineural hearing loss and enrolled with DSCC and Early Intervention.

“She’s been in her element. She loves watching people sign,” T.J. said, noting Larkin has already mastered several basic signs herself.

The Taylors want to let Larkin choose her communication form and her assistive device as she gets older. T.J. said it’s been valuable for the couple to hear so many positive stories about different options.

Brianna said she also values the connection with other families.

“We all have different journeys but it’s nice to be able to relate to those different stories,” she said.

Lynsey Runyon attended with her 4-year-old son, Branson. She said she was impressed with the amount of information available during Institute.

Years of problems passed before Branson’s hearing loss was diagnosed in spring 2018. A few months later, Lynsey moved her family to Jacksonville so Branson could attend the Illinois School for the Deaf late last fall.

Lynsey said she often feels she is trying to play catch-up with learning about the world of hearing loss. She appreciated the Institute’s more in-depth lectures and workshops to explain topics in ways she could easily understand.

“I only wish we would have found out about this sooner,” she said.

Many of the attendees encouraged other parents to consider the Institute.

“Don’t be afraid to ask for help because you have a community that’s ready to be there and help you,” Leticia Hubart said. “Don’t’ be afraid to advocate for your child.”

Visit our Facebook page for photos from this year’s Institute.

For more information about the Institute for Parents of Preschool Children Who Are Deaf or Hard of Hearing and how DSCC supports children with hearing loss, call (800) 322-3722 or email dscc@uic.edu.

Visit our Facebook page for photos from this year’s Institute.

The following organizations supported the 2019 Institute:

• University of Illinois at Chicago’s Division of Specialized Care for Children (DSCC)
• Department of Human Services (DHS) Division of Rehabilitation Services (DRS)
• Illinois School for the Deaf (ISD)
• Illinois State Board of Education (ISBE)
• Department of Public Health (DPH)
• Ann & Robert H. Lurie Children’s Hospital of Chicago

Division of Specialized Care for Children participant Trenten Jankuski has a special vacation and accessible home, thanks to Care Coordinator Angel Lawrence’s efforts.

Angel Lawrence is a Care Coordinator at the University of Illinois at Chicago’s Division of Specialized Care for Children (DSCC). A big part of this job involves connecting families with the right services and resources to support their children with special healthcare needs. Sometimes, a seemingly simple connection can make a dream come true.

Such was the case for Trenten Jankuski, a 16-year-old DSCC participant with cerebral palsy.

More than two years ago, Angel started working closely with Trenten’s family to help make their home more accessible.

The Jankuskis live in a bi-level home. It made sense for Trenten’s therapy needs to move his living space to the home’s lower level. However, Trenten’s power wheelchair could not access the lower level.

Angel got to work seeking bids from vendors who could examine the house and determine what modifications would be necessary. Angel enlisted the help of UIC’s Assistive Technology Unit, which determined that an elevator would be the best option for the home and Trenten’s wheelchair. The elevator, however, would have a high price tag.

Angel then started checking for funding sources and grant opportunities. After months of effort, she helped the Jankuskis receive a grant from the Illinois Department of Rehabilitation Services to cover most of the elevator’s costs. Angel also contacted Make-A-Wish Illinois and the Illinois Elks Children’s Care Corporation to see if any assistance was available.

The Illinois Elks Children’s Care Corporation was able to provide the remaining funds needed for the elevator, which was installed in March.

But the Make-A-Wish Foundation took an interest in Trenten’s story and contacted his mother to set up an interview in February. A trip to Disney World for his whole family was soon in the works for the avid Disney fan.

On March 15, local Make-A-Wish granters met Trenten’s parents at his high school to surprise him and announce the special vacation would start that Sunday. The Kankakee Daily Journal newspaper was there to capture the fun announcement. You can read the Daily Journal’s coverage on the newspaper’s website.

Angel said she’s delighted to see Trenten, his parents and his siblings have this special getaway together.

“This is an opportunity for them as a family to really enjoy one another in a fun atmosphere, away from the reality of day-to-day life,” she said. “They can enjoy a real vacation.”

We’re grateful for Angel’s hard work to help this very deserving family. Congratulation to Trenten and all of the Jankuskis!

Molly Hofmann has been named an Emerging Nurse Leader in Illinois.

The University of Illinois at Chicago’s Division of Specialized Care for Children (DSCC) is pleased to announce that our Associate Director Molly Hofmann is one of the 40 Under 40 Emerging Nurse Leaders in Illinois.

The Illinois Nurses Foundation sponsors this award, which highlights and celebrates young nurse leaders who are influencing health care and the nursing profession today.

Molly is an advanced practice registered nurse (APRN) who serves as DSCC’s Associate Director of Care Coordination. In this role, she oversees the development and implementation of all care coordination operations, policies and procedures for the Core and Home Care Programs.

Molly is also working on her doctorate of nursing practice degree through UIC’s College of Nursing in Peoria.

“This is a wonderful recognition of what she has accomplished in her young career. We are fortunate to have Molly as part of the DSCC Leadership Team,” DSCC Executive Director Thomas Jerkovitz said. “She lives our mission to partner, help and connect every day.”

Molly says she is passionate about the appropriate and comprehensive care of the pediatric patient and their family.

“I have seen the positive impact good care coordination can have for children and their families and am excited to be a part of a team with a mission to partner, help and connect families and the community,” she said.

Before joining DSCC in November 2016, Molly worked as an APRN at the Pediatric Resource Center in Peoria. The Pediatric Resource Center is a program of the  UIC College of Medicine in Peoria and affiliated with Children’s Hospital of Illinois (CHOI).

Her past experience also includes:

• Serving as an APN and clinic coordinator of the Trach/Vent Program at CHOI
• Performing clinical projects as a Six Sigma Black Belt
• Working as a registered nurse in pediatric intermediate care and the emergency department

Molly lives in Washington with her husband and two young daughters.

Molly and her fellow awardees will be honored on Sept. 12 at the Illinois Nurse Foundation’s award recognition event in Lisle.

Congratulations, Molly, on this well-deserved honor!

UIC’s Division of Specialized Care for Children highlights the need for timely screenings and follow-up services in honor of Better Hearing and Speech Month.

The ability to communicate is one of the most important achievements of early childhood.

If a child’s ability to hear or speak is limited or absent, different supports are necessary to reach this milestone.

In honor of Better Hearing and Speech Month in May, the University of Illinois at Chicago’s Division of Specialized Care for Children (DSCC) reminds parents and caregivers of the importance of early screenings and follow-up services for children and youth with hearing and speech impairments.

“If left undetected, hearing and speech impairments can affect a child’s behavior, social interactions, academic success and more,” DSCC Executive Director Thomas Jerkovitz said.

“Early detection is crucial as many services and resources are available to help these children develop age-appropriate language skills. The sooner a child receives a diagnosis, the sooner he or she can receive the proper support to reach their full potential.”

DSCC is a state program that serves Illinois children with special healthcare needs, including hearing and neurologically-related speech impairments.

Our organization has 11 regional offices throughout Illinois. DSCC staff includes speech and language pathologists, audiologists, social workers, nurses and other professionals trained to help families find the specialty care and resources their child needs.

DSCC care coordination teams are a great resource for both families and healthcare professionals when a child does not pass a hearing screen and needs a diagnostic evaluation. They can also assist when there are concerns about a child’s communication skills.

Our Care Coordinators can educate families about their child’s condition, find specialized medical care for their unique needs and explain available options for communication and language development.

They can also attend school meetings with parents to ensure their child’s educational needs are being met and connect families with support services and community funding opportunities, if needed.

DSCC also plays an important role in the Illinois Early Hearing Detection and Intervention (EHDI) program. The EHDI program works with hospitals, pediatric healthcare providers, audiologists and parents to ensure:

• All infants are screened for hearing loss no later than 1 month of age.
• All infants who do not pass their hearing screen receive a diagnostic evaluation no later than 3 months of age.
• All infants with a hearing loss enroll in early intervention services no later than 6 months of age.

Research shows that infants with hearing loss can develop similar language skills to their peers without hearing loss by the time they enter kindergarten when these “1-3-6” benchmarks are met.

DSCC recommends that parents and caregivers talk to their child’s healthcare provider if they have questions or concerns about their child’s hearing, speech or language. The American Speech-Language-Hearing Association provides helpful resources about warning signs at https://identifythesigns.org/.

If a child does not pass a hearing screen and is in need of a diagnostic evaluation or support for a medical condition, parents and caregivers can contact us at (800) 322-3722 or dscc@uic.edu.

Day and overnight summer camp opportunities for all ages and abilities throughout Illinois.

Summer is fast-approaching, along with a long break from school. We’re here to help you find the right activities and programs to keep children and young adults engaged and learning.

Our Care Coordinators and support staff have compiled a list of day and overnight summer camp opportunities across the state. These camps are designed for a variety of special needs and abilities, including many of our program’s eligible medical conditions.

Whether your child wants to make new friends, develop new skills, meet others with their condition or foster their independence, our 2019 summer camp list provides a variety of options.

Our events calendar shows the summer camps listed by date. You may also search for events in your area by clicking on a regional office near you.

Doctors placed a “winter coat” around Eloise Hoffman’s heart to fix a rare congenital heart defect.

Eloise Hoffman is an energetic 2-year-old who loves to laugh, play outside and chase her grandparents’ dog.

“She’s just this little fireball that people can’t help but love,” her mom, Krista Hoffman,  said

Thanks to what her family calls a “winter coat” for her heart, Eloise is now thriving after a major surgery to fix her rare critical heart defect.

Her amazing story has gained national news coverage and captured the hearts of thousands across the country.

Eloise and her mother, Krista Hoffman.

“People have been so supportive,” Krista said. “We are so grateful that everyone cares so much for her and for us.”

Shortly after she was born, Eloise’s pediatrician noticed she had a heart murmur and referred her to Dr. Michael Perez, a pediatric cardiologist at Northwestern Medicine Central DuPage Hospital.

Dr. Perez diagnosed Eloise with truncus arteriosus, a birth defect of the heart in which only one common blood vessel comes out of the heart instead of two. The single vessel means oxygen-poor blood and oxygen-rich blood get mixed together, sending too much blood to the lungs and causing the heart to work harder.

“It sort of felt like it was out of a movie, because he told us and then a few minutes later we were ushered into another room because we would have to go up to Lurie Children’s Hospital via either a helicopter or ambulance,” Eloise’s father, Matt Hoffman, told People Magazine, who covered Eloise’s story. “It all just took off from there within five minutes of learning what was happening.”

Eloise required immediate surgery or she would go into heart failure. When she was only three weeks old, doctors placed a piece of Gore-Tex insider her heart.

Eloise and her father, Matt Hoffman.

Gore-Tex is a material that’s often used to make jackets and outerwear. For Eloise, it serves as conduit to make up for the single blood vessel out of her heart.

“I like to tell people that she’s got a little winter coat in there, keeping her heart warm,” Matt told Good Morning America.

To Matt and Krista’s relief, the surgery was a success. Eloise soon came home to her parents and older brothers.

In 2018, Eloise became enrolled with the University of Illinois at Chicago’s Division of Specialized Care for Children (DSCC). Her older brother Henry, who has a g-tube and dysphasia, is also a DSCC participant.

“Since we have the two children that have special needs, it can be difficult sometimes,” Krista said. “We just really appreciate that there is a service out there like this for families like us to take some of the burden away. It allows us a little less stress and a little more time to just be parents.”

Today, Eloise is doing great and continues to grow and gain weight normally.

“She eats like a champ. We actually call her the little garbage disposal at our house because she loves everything,” Krista said.

Dr. Perez recently told the Hoffmans that Eloise is near the point where she’ll only need annual appointments.

Eloise and her two older brothers during a recent visit to the Easter Bunny.

“That’s huge,” Krista said. “She will probably need a (catheterization) procedure in a year or so because she has stenosis where the conduit was stitched in, and she as a mild to moderate leak in her valve. Those are all future issues, though.”

Krista said her family appreciates the interest in Eloise’s condition. She believes it is important to spread awareness and talk more about congenital heart defects.

“For any parents who are pregnant or have truncus babies, it seems scary, but it’s not as frightening as you think it will be,” Krista told People Magazine. “Focus on the things you can change, not the things that you can’t.”