“A powerful true story about trusting your instincts, holding onto hope and never, ever giving up.”

After her son, Nixon, was diagnosed with a rare, fatal disease, Kristin Skenderi started blogging and sending her family and friends regular email updates about his condition.

“I wanted Nixon one day to know what he went through,” Kristin recalled.

Her blog posts, emails and journal entries were the early drafts of what was to become a book detailing the Skenderi family’s experiences treating Nixon’s disease and the lessons they’ve learned. “Holding Hope in Our Hands,” was published in September and launched last month.

“I put myself in front of the computer and it took me three years,” Kristin said of the writing process. “It’s a powerful true story about trusting your instincts, holding onto hope and never, ever giving up.”

Nixon was born without an enzyme that helps the brain develop, Kristin explained. At just a few months old, he was diagnosed with Gaucher Disease Type 2, which hindered his breathing, swallowing and neurological development and enlarged many of his organs. Doctors said he likely wouldn’t live past 3 years old.

Kristin said the devastating news put her in survival mode and she began a quest to research every treatment option available. Nixon later received a stem cell transplant and has also benefited from acupuncture, equestrian therapy and hyperbaric oxygen therapy to reduce or stave off some of the effects of his disease, Kristin said.

On Nov. 1, Nixon turned 4 during a trip to Disneyworld through the Make-A-Wish Program. It was the first birthday he was able to spend outside of the hospital.

Kristin’s book details each step of their journey to help Nixon progress to where he is today. She credits the University of Illinois at Chicago’s Division of Specialized Care for Children (DSCC) with providing the support her family needed so she could have time to research treatment and therapy options for Nixon and write about their experiences.

Nixon is enrolled in the Home Care Program, which DSCC operates on behalf of the Illinois Department of Healthcare and Family Services. The Home Care Program allows youth who require skilled in-home nursing to remain in their family home rather than a hospital or skilled nursing facility.

“The things (DSCC) can offer and help us with – it’s been huge,” Kristin said.

DSCC arranged for the installation of new electrical outlets in the Skenderi’s home to handle Nixon’s medical equipment. DSCC also covered the cost for an exterminator as well as a wheelchair ramp for the family’s home.

“It’s amazing that there’s a resource out there for families like us,” Kristin said. “Because those things were taken care of by (their Care Coordinator) Beth, I didn’t have to worry about it and it gave me more time and effort to work on trying to find solutions for Nixon.”

You can learn more about Nixon and his family’s journey on their Facebook page.

“If this book helps the average, regular person look at life a little bit differently, or I can find that one family who was ever put in a situation like ours and give them courage to fight a little harder, then this book was 100 percent worth it,” Kristin said.

Congratulations, Skenderi family!

Mokena Regional Office’s Lynda Miller honored for outstanding service to children with special healthcare needs.

Lynda Miller of Lemont is the 2017 recipient of the University of Illinois at Chicago’s Division of Specialized Care for Children (DSCC) Award of Merit. The award recognizes exceptional employees for outstanding dedication and service to children with special healthcare needs.

DSCC is a statewide program that partners with Illinois families and their local communities to help children with special healthcare needs connect to the services and resources they need to reach their full potential. We serve thousands of families each year in all 102 Illinois counties through a network of nurses, social workers, speech pathologists, audiologists and other team members in 12 regional offices.

Lynda is a Program Coordinator Assistant in DSCC’s Mokena Regional Office, working with Care Coordinators in her office to develop a plan of care for each family that addresses their child’s medical, social, behavioral, educational and financial needs.

“Lynda exemplifies DSCC’s mission to partner, help and connect with families and communities to improve the lives of children with special healthcare needs and put them at the center of a seamless support system,” DSCC Executive Director Thomas Jerkovitz said. “Lynda has touched countless lives during her nearly 30-year career and is an unwavering champion for our organization and the families we serve.”

Colleagues across the state say Lynda’s primary focus and concern is giving DSCC families the best service possible and treating them with kindness and respect. Lynda is also praised as an effective problem-solver who is willing to step outside of her comfort zone to learn something new, hard or time-consuming to get the job done.

Lynda, who was also nominated for the 2016 Award of Merit, said she enjoys all facets of her job. “I love helping whenever and wherever I can,” she said. “I have been lucky to work with a lot of people who have mentored me along my DSCC career.  I wouldn’t have the knowledge and ability to do what I do without their help and assistance along the way.”

DSCC staff nominated five of their colleagues for this year’s Award of Merit. As the winner, Lynda receives an Award of Merit memento, a $2,000 award and recognition from the Executive Director.

The other 2017 nominees are:

• Dawn Brzostek, Customer Service Assistant, Rockford Regional Office
• Cherie Dalbke, Care Coordinator/Speech and Hearing Consultant, Chicago Core Regional Office
• Diana Maldonado, Program Coordinator Assistant, Lombard Regional Office
• Glenda Rahn, Program Coordinator Assistant, Champaign Regional Office

Congratulations, Lynda, and a big thank you to all of our nominees!

500-plus families and professionals attended the 13th annual Stepping Stones of Transition Conference in Springfield

More than 500 families and professionals learned valuable information about helping adolescents with special needs/disabilities prepare for adulthood during the 13th annual Illinois Statewide Transition Conference on Oct. 23-24 in Springfield.

The conference, titled “Stepping Stones of Transition,” is aimed at youth, parents, caretakers, vocational professionals, healthcare professionals, educators and other key stakeholders  Participants were invited to discuss the possibilities for students with disabilities in the areas of independent living, education and training, employment, community integration, health care and self-advocacy. Youth and young adults with special healthcare needs learned how to plan for their future and life after high school, how to sort through the maze of resources and what skills are important to develop to prepare for adulthood and meet their goals.

The University of Illinois at Chicago’s Division of Specialized Care for Children (DSCC) served on the steering committee for this year’s conference and covered the conference-related expenses for 20 of our participant families across the state. Part of DSCC’s mission is to connect adolescents with special healthcare needs and their families to resources that prepare them for the transition to adulthood and the delivery of adult services.

Former DSCC participant Ashley Santiago-Sanchez, 21, attended the conference with her parents and younger brother. Her father, Ivan, said his family wanted to gain as much information and resources as possible to help foster her independence and prepare for adult life in the community.

Saurabh and Mukta Agarwal attended with their teenaged daughter, Radhika, who currently is enrolled with DSCC and requires skilled in-home nursing. Their Care Coordinator made sure that DSCC paid for the family’s registration, hotel, transportation and cost for a daytime nurse for Radhika.

“A lot of times families (like ours) don’t know the options,” Saurabh said of planning for the future with a medically complex child.

Saurabh said he was especially touched by keynote speaker Matt Cohen, who spoke about his experiences with his son and how he learned to determine transition priorities for students and ensure their real-life needs are met. He and Mukta also appreciated the opportunity to make connections with other families and professionals.

“All of the information was very helpful, and now we have to do our homework,” Saurabh said.

Click here to view photos and more information about this year’s conference.

The 2018 Illinois Statewide Transition Conference is scheduled for Oct. 25-26 at the Westin Chicago Northwest Hotel in Itasca.

Emma Wiker organized her third successful dog walk to benefit abused and neglected animals.

For many preteens, summer is a time to relax, have fun with friends and enjoy the break from homework before school starts again. But for 12-year-old Emma Wiker, summer is the time to focus on her passion for helping animals in need and inspiring others in her community to do the same.

Three years ago, Emma started the Animal Abusive Protection Program to raise money for abused or abandoned animals in Menard County. She sells buttons and key chains and organizes a hugely popular annual dog walk in her in her hometown of Athens to benefit the program.

Emma also has a vocal cord dysfunction that impairs her ability to breath. She was wrongly diagnosed as asthmatic for most of her life and spent years suffering allergic reactions to unnecessary medications until 2016. She then became enrolled in the University of Illinois at Chicago’s Division of Specialized Care for Children (DSCC) program, which has helped her family communicate with Emma’s doctors and specialists and find medical providers that are covered by their insurance.  Her mother, Violet, is a former Care Coordinator and now DSCC’s Family Liaison.

Violet says Emma has always been determined and committed to helping others. She was inspired to start the dog walk after seeing a disturbing image of an abused dog that went viral on social media.

Though she hasn’t reached her teen years yet, Emma handles all of the responsibilities of planning and coordinating the dog walk herself and has become a local celebrity.

About 100 people attended this year’s third annual dog walk on July 15, raising more than $3,000 for Menard County Animal Control. (You can watch local news coverage of the event here.)Ten current and former DSCC staffers attended the dog walk with their pets to support Emma’s cause.

“This is another perfect example of how DSCC staff go above and beyond to support each other,” Violet said.

Emma is already looking forward to planning next year’s dog walk. You can read more about Emma’s efforts and how she got started with the Animal Abusive Protection Program here.

Amazing job, Emma!

 

“He is a modest, humble kid who always puts forth his best effort and rarely complains.”

Alex Killian is an involved eighth-grader at Gibson City Middle School who pours himself into his studies and extracurricular activities with passion and focus. But he’s not your typical middle school student. His teachers say they’re the ones who look up to him for his bravery and determination as he lives with cystic fibrosis (CF).

Alex was recently featured in WCIA 3 News “Kid to Know” series after his teachers recommended him for the honor.

He is a straight-A student who loves math, science and history. He enjoys playing in the local soccer league and has been an active member of the GCMS Scholastic Bowl team for the past three years. Alex went to state for the geography bee and won every single competition in that event for two years in a row. He also participates in summer and winter theater productions from a local theater group called A.C.T. and tried his hand at track and field this spring.

“He is a modest, humble kid who always puts forth his best effort and rarely complains,” his mother, Andrea Killian, said.

Therefore, many are surprised to learn that Alex was born with CF, a disorder in which a defective gene causes thick mucus to buildup in the lungs, pancreas and other organs. This buildup causes persistent lung infections and restricts breathing as the disease progresses.

Alex was diagnosed with CF in December 2003 and the counselor at the family’s CF Clinic in Peoria suggested the Killians consider enrolling with the University of Illinois at Chicago’s Division of Specialized Care for Children (DSCC).

“We’ve been working with DSCC ever since and have had a very positive experience. We have typically qualified for copay assistance and over the years, that has been a huge help with prescriptions as Alex takes several medications and even the copays become rather costly,” Andrea said.

The Killians recently began working with their second DSCC Care Coordinator, Angel, and say she’s been a huge help in addressing Alex and his family’s needs.

In 2015, Alex was selected for the Make-A-Wish Program and chose to travel to Ireland with his whole family. The family made the trip over spring break 2016. That May, he was hospitalized for the first time and received a peripherally inserted central catheter (PICC) line. He was able to finish the school year with a 20-day round of IV antibiotics at home.

“He was so disappointed to miss the last few weeks of school, but again, he took the changes in stride, completed all his homework and made it to school for the last couple of days with his IV in place,” Andrea said.

This past winter, Alex was asked to speak about his experiences with CF at his school’s “GRIT” assembly, which features students speaking about challenges they face in their daily lives.

Andrea says Alex takes an active role in his CF care by helping to clean and disinfect his nebulizer cups and by doing his treatments and taking his medications on his own. Currently, he does chest therapy via a vest that shakes him twice a day for 30-minute periods. He also does a minimum of four nebulizer treatments per day and takes several medications in pill form.

In addition to excelling at school and his extracurricular activities, Alex is also a great big brother to three younger siblings and is a huge help to his parents at home, Andrea said.

Congratulations on all of your achievements, Alex! We’re excited to see what you accomplish next.