Nathan Lichucki is collecting donations for a teen library at Edward Hospital in Naperville for his Eagle Scout Service Project

Nathan Lichucki has spent a lot of time at Edward Hospital in Naperville.

The 14-year-old receives regular infusions there to treat his rare disease.

“Every 21 days, I go for infusions, and I know the hospital very well. The child life specialists there are really good. They give us things when we have hard days, but they don’t usually have stuff for older kids,” Nathan said. “I really like to read, and it is an easy thing to do while you are there. They said they were running out of things for older kids because nothing was being donated during COVID.”

Nathan is also a longtime Scout who is working to achieve the highest rank of Eagle Scout. To earn it, Nathan must complete a service project to show his leadership skills.

Nathan saw a need at Edward Hospital firsthand and decided to create a library for teen patients. The library will include a cart, various books and activities aimed at young adults.

“Many times, kids are in the hospital for several days at a time. There is not good cell service on the PICU (pediatric intensive care unit) side and if you have certain monitors on, a tablet has to be away from your body,” Nathan explained.

“I thought that if kids could have something to occupy them at least for a while, that would be very beneficial.  I have been in the hospital lots of times, more than I can count, and you get super bored, especially when you start feeling better but cannot go home yet.”

Nathan worked with Edward’s Child Life Team to come up with a list of items to collect for the teen library. Nathan is collecting the following:  

• Books for ages 12-17
• Blank journals 
• Colored pencils/markers/adult coloring books
• Puzzle books (crossword, sudoku, etc.) 

All items must be new due to the hospital’s infection control policies.

“The kids get to take the books and games home, so they are useful not just at the hospital but also at home,” Nathan said of the library.

He has sent letters to friends, families and businesses to request donations for the library. He has also set up an Amazon wish list that anyone can access and purchase items to ship to his home.

Local donors can also drop off items at Illinois State Rep. Terra Costa Howard’s Office at 913 S. Main St. in Lombard.

“Everyone thought that my project is a super idea for a project and one that has not been done. The child life specialists were super excited for me to build the library for the patients and they have been very helpful in making sure that I have the right items on the wish list to make sure that they would be used,” Nathan said. “I want to make sure that there are lots of choices for the kids.”

Nina Sittler, a certified Child Life Specialist at Edward Hospital, said she loves that Nathan’s project focuses on an age group that is often overlooked for donations.

“A unique element that Nathan is incorporating is he is asking for book series. We would often get individual books from a series but rarely the entire series. It will be nice to offer the entire series to one patient,” she said.

The deadline to complete Nathan’s Eagle Project is Aug. 2. However, Nathan and his family expect to continue collecting donations on an ongoing basis to help keep the teen library stocked.

Nathan said he’s been happy with the number of donations coming in so far. His health conditions make him highly susceptible to infections, so his troop members have helped pick up items directly from donors when it isn’t safe for Nathan to do so.  

Nathan has a primary immune deficiency and a rare disease called Stiff Person Syndrome (SPS) along with other complicating diagnoses. He is enrolled with the Division of Specialized Care for Children (DSCC) in the Home Care Program.   

“SPS is very hard. It makes my muscles very stiff. I cannot hold parts of my body without them shaking a lot.  It makes it hard to write, speak and walk.  I cannot move my hands a lot and they get locked into place sometimes,” Nathan explained. “ It sometimes pops my joints out of place. I cannot walk very far. I use braces and my wheelchair so that I can get farther.  My face and chest get a lot of muscle spasms, and it makes me forgetful when it attacks my brain.”

Nathan has a beloved service dog named Dakota. Dakota, a 4-year-old Belgian Malinois, monitors his blood sugar and helps him with his balance when he is moving outside of his wheelchair.

As a DSCC participant, Nathan and his family work with their DSCC Care Coordinator to identify goals for the transition to adulthood and self-management. One of Nathan’s goals in this area was to participate in Scouts with minimal medical interruption.

Nathan loves scouting and was inspired by his four uncles, who all earned the rank of Eagle Scout. Nathan’s grandfather was also a scoutmaster for 20 years.

Nathan is currently the librarian for Troop 202.

“My troop does a great job of including me by giving me jobs that don’t have a lot of dexterity and don’t require a ton of small movements.  My friends are in my troop and we liked to hang out before the pandemic, now we just text each other,” Nathan said.

He enjoys all scouting activities, including camping, hiking and looking at wildlife. He has earned 63 merit badges to date — only 21 are required for the rank of Eagle.

“Nathan is a very dedicated scout who holds true to the 12 points of the scout law.  Despite all he has to endure health-wise, he always keeps a positive attitude and does what he can to help others in his troop and community,” Troop 202 Assistant Scoutmaster Dave Andrusyk said. “This past summer, he took advantage of many of the virtual offerings for merit badges and he stayed active in scouting.  The many badges and awards he earned show how dedicated and resourceful he is.”

Nathan appreciates the friendships he’s made through Scouts and encourages other young people to give it a try.

“Helping other people is a huge part of scouting and there are many ways to do scouting.  You can ask people what they need and then provide that as a service,” he said. “You don’t have to stop scouting when you are sick, you can find your own path and do things at your own pace and do a lot of stuff from home and if you pick a good supportive troop, that is very important.”   

DSCC staff join forces to honor caregivers during National Family Caregivers Month.

Staff at the University of Illinois at Chicago’s Division of Specialized Care for Children (DSCC) understand that caring for a child with special needs is one of the most demanding circumstances a family can face.

For National Family Caregivers Month in November, we wanted to do something special to support the amazing caregivers we partner with while also having fun working together as a team.

We invited our regional offices to plan a service project to benefit a group of caregivers in their community. Many of our staff jumped at the chance to participate.

Here’s a recap of how they helped –

Champaign Regional Office

Champaign RO staff put together care packages for families with children hospitalized in the Carle Foundation Hospital neonatal intensive care unit (NICU).

They filled our DSCC drawstring backpacks with items to help make staying at the hospital more comfortable for these deserving parents. Champaign staff are also partnering with Carle’s NICU and mother/baby social workers so families are aware that DSCC is here to help connect them to services and resources.

Carle’s NICU and mother/baby social workers were thrilled to pick up the packages and to have our organization as a source of support for their families.

Lombard Regional Office

The Lombard RO made 17 cozy fleece blankets for the children staying at Almost Home Kids in Naperville.

Almost Home Kids provides transitional care in a home-like setting to children with complicated health needs, training for their families and respite care.

Lombard staff made the no-sew blankets during their breaks. They also donated three cases of water and multiple packs of Kleenex to add to the “Go Bags” that Almost Home Kids provides to their families.

Marion and Olney Regional Offices

The Marion and Olney ROs joined forces to create caregiver bags for families who have children in the NICU at Memorial Hospital of Carbondale.

One of the NICU nurses shared that families often need note pads, pens, snacks, warm socks, etc.

Marion and Olney staff donated enough of these items to fill 25 DSCC drawstring bags.

Mokena Regional Office

On Dec. 7, our Mokena RO team prepared and served dinner at the local PADS (Public Action to Delivery Shelter) at Zion Lutheran Church in Tinley Park.

PADS provides overnight shelter and meals for people who are homeless. Community partners, such as churches and congregations, provide sites for the shelter and teams of volunteers to run it from October to April.

Mokena staff made a dinner of homemade Sloppy Joes, roast turkey, plenty of sides and a dessert for approximately 30 women and children.

Peoria Regional Office

Peoria RO staff collected items off of the wish list for the newly opened Almost Home Kids at OSF Children’s Hospital of Illinois.

Almost Home Kids opened in Peoria in September. The 12-bedroom, 21,000-square-foot facility provides transitional care in a home-like setting for children with complex medical needs. It also provides training and respite care for their families.

Almost Home Kids is funded entirely through community donations.

Our Peoria staff purchased diapers, baby wipes, towels, coffee, children’s books, assorted toys and other supplies to help the children feel more at home.

Rockford Regional Office

The Rockford RO staff provided bags of comfort and a taste of home to the NICU families at Mercyhealth Rockford.

They donated money and purchased wish list items to make 25 backpack care packages.

Each bag contains a journal, pen, water, drink mix, calendar, hand sanitizer, Kleenex, chapstick, gum, granola bars, chicken soup and lotion.

Springfield Regional Office and Central Administrative Office

Our Springfield RO and CAO staff worked together to prepare a meal for the families staying at the Ronald McDonald House Charities of Central Illinois in Springfield.

They decided on a pasta bar menu with sides and a dessert. Employees divided up portions of the menu to do the shopping ahead of time. A group of 11 prepared the meal at the house on Nov. 5.

The Springfield and CAO staff also collected donations to purchase a total of 33 gift cards for the families staying at the house to use at HSHS St. John’s Children’s Hospital’s dining facilities and coffee shops.

We are proud of our staff’s generosity and strong commitment to improving their local communities!