Kimberley Firkins recognized for exemplifying DSCC’s mission to partner, help and connect

Kimberley Firkins is the 2021 recipient of the Award of Merit from the University of Illinois Chicago’s Division of Specialized Care for Children (DSCC).

The award recognizes exceptional employees for outstanding dedication and service to Illinois children with special healthcare needs.

Kimberley, also known as “Kim” or “Kimba“ to co-workers, is a Program Coordinator Assistant for Home Care Region 2. She is based in the Lombard Regional Office.

Program Coordinator Assistants work as a team with Care Coordinators to meet our participant families’ needs.

Kimberley is a team player and a constant source of encouragement and support for her participant families and co-workers alike.

Her colleagues say she is friendly, welcoming and gladly offers her creativity, knowledge and skills to assist wherever needed.

She sends her Lombard teammates positive messages and self-care tips weekly to keep everyone motivated and foster a positive work environment. Those messages have helped bridge the “disconnect” of working remotely through the pandemic.

Co-workers say her calm and caring nature puts the families she works with at ease.

“Kimberley’s enthusiasm and passion for serving others are an inspiration to many,” said DSCC Executive Director Thomas Jerkovitz. “The past two years have been challenging. Kimberley’s teamwork spirit highlights that the way we are working may be different, but our dedication to each other and our participant families remains strong.”

Kimberley has worked at DSCC for 16 years in the Core and Home Care programs.

“I would like to say how fortunate I am to work in an organization that makes such a huge impact to so many people and families, especially over the last almost two years,” Kimberley said.

“I hear from families almost every day how important it is for them to hear from their care coordination team not just as their Care Coordinators or the Care Coordinators’ Assistants but as their friends as well, wanting to know how they’re doing, how things are going, and how they’re handling all of the stressors that are happening right now. It just means so much to me to know that our organization has that place in their family.”

Kimberley was an Award of Merit nominee in 2016, 2018, 2019 and 2020. She said she is both honored and surprised to receive the 2021 award.

“I am so very grateful. It means the world to me, but I don’t do what I do without everyone else. We’re all one team. We all won this,” she said.

DSCC staff nominated a total of six of their colleagues for this year’s Award of Merit. As the winner, Firkins receives an Award of Merit memento, a $2,500 award and recognition from the Executive Director.

The other 2021 nominees are:

• Cynthia Booth, Home Care Program Hospital Liaison, Chicago Home Care Regional Office
• Becca Hunt, Care Coordinator, Marion Regional Office
• Danielle Osburn, Claims Unit Assistant Supervisor, Central Administrative Office
• Tess Rhodes, Quality Improvement Specialist with Core Quality Improvement, Central Administrative Office
• Marian Walles, Care Coordinator, Mokena Regional Office
  

Congratulations, Kimberley! And a big thank you to all the nominees for their excellence on behalf of our children and families!

Families and professionals came together in person and virtually at the annual Stepping Stones of Transition Conference in East Peoria to improve outcomes for transition-age youth with special needs

As a single parent raising a child with complex medical needs, Kristen Fisher says it’s easy to feel isolated.

The feeling subsided as she walked through the East Peoria Riverfront Conference Center and saw dozens of other parents and youth with similar needs.

“Seeing everyone at the conference and meeting other parents, it helps confirm that I’m not alone,” Kristen said.

The Illinois Statewide Transition Conference, titled “Stepping Stones of Transition,” returned for its 16^th year on Nov. 4-5 in East Peoria after a one-year absence due to the COVID-19 pandemic.

More than 660 families and professionals gathered in-person and virtually to gain skills, resources and information to help youth with disabilities prepare for adulthood.

The University of Illinois Chicago’s Division of Specialized Care for Children (DSCC) is a conference sponsor and served on its steering committee.

DSCC covered the conference-related expenses for 33 of our participant family members across the state.

A “Phenomenal” Experience

Kristen is the mother of DSCC participant Connor Fisher, who will soon turn 15 years old. He was born prematurely with profound delays and a “smile that will melt your heart,” she said.

This year’s conference was Kristen’s first and she called the experience “phenomenal.”

“It’s hard to grasp that my baby is not a baby. He’s growing up. It’s a scary transition,” she said.

Kristen particularly enjoyed the breakout session “SSI, SSDI, HFS: Understanding the Alphabet Soup of Government Benefits.” She gained a better understanding of available government benefits and how they change over the lifetime.

DSCC mom Amy also learned helpful information during the breakout session on government benefits. She said financial planning is an important part of preparing for her daughter Jaida’s future. Jaida, 17, has been a DSCC participant since just after birth.

Eighteen-year-old DSCC participant RJ Smith attended the conference with his mom, Karla. It was the first time attending for both.

RJ is a senior in high school who plays the baritone in his high school band. He wants to go to culinary school after graduation to become a baker.

He picked all the conference breakout sessions that he and Karla attended.

One of their favorites was about the Fast Track Transition Program through the Illinois Department of Human Services’ Division of Rehabilitation Services. The program provides pre-employment transition services to students with disabilities.

RJ said he is ready for more independence, and Karla said the session helped open her eyes to more options to help achieve that.

“I want to help him become more independent and push him toward that but not just leave him sitting the middle of the road, stranded,” Karla said.  “(The conference) overall has been helpful.”

Preparing for Life After Graduation

The conference consisted of informative breakout sessions in the areas of:

• Employment
• Education
• Community
• Health Care

DSCC participant Michael Rounds, 15, said he enjoyed the breakout session on the Culture of Coordinated Support Model. This model is where people with disabilities, families, supporters, agencies and service providers work together to develop and implement consistent support plans with unified goals and services provided by the provider best suited to do so.

Michael said the session made him think about getting more involved with his Individualized Education Program (IEP) at school. He also liked learning more about what choices are available to him as he plans for his future.

His mother, Lori, said the conference helped her know where to start in preparing Michael for life after high school graduation.

Rosa Menard, mom to 17-year-old DSCC participant Jacob, said the amount of information to soak up over the two-day conference was almost overwhelming. She took many notes about potential resources and programs to discuss during Jacob’s next IEP meeting.

Jacob is non-verbal and she wants to set him up for success after high school.

Rosa encouraged other families to start the transition planning process as soon as possible.

“Start asking those questions now,” she said.

Improving Outcomes

Nearly 40 DSCC staff members attended the conference in-person or virtually to network, learn from others and strengthen their skillsets and tools to serve our families.

DSCC also sponsored the conference’s health care track for providers who play a role in the transition from the pediatric to adult healthcare system and those who build youth’s capacity and healthcare skills to prepare for adulthood.

DSCC Transition Specialist Darcy Contri said attending providers found helpful tips and information they will apply in their own practices and interactions with youth and families. These changes include:

• Starting the transition planning process sooner with patients and families
• Making sure the youth and their family are included in all decision-making and planning
• Keeping a holistic view of the patient and noting environmental barriers for their family
• Emphasizing self-determination when working with youth and families on transition goals
• Discussion of self-management strategies with youth and families

Darcy has been involved with planning the conference for the last 16 years.

“Every year it has been exciting to see the positive impact the transition conference has on improving outcomes for Illinois transition-age youth and their families,” she said.

Visit our Facebook page to see more photos from this year’s conference.

UPDATE: Please note this support group is now open to all families of children enrolled with the Division of Specialized Care for Children. See the latest support group news for more details.

The University of Illinois Chicago’s Division of Specialized Care for Children (DSCC) is partnering with UIC’s Leadership and Education in Neurodevelopmental and related Disabilities Program (IL LEND) to offer a support group for families enrolled in the Home Care Program.

The Home Care Program helps children and adults who require in-home nursing care. DSCC operates the Home Care Program on behalf of the Illinois Department of Healthcare and Family Services.

This support group will provide an online space for parents to access educational workshops and swap concerns, resources and strategies.

There is no cost for families to participate.

The group will meet on the third Wednesday of the month from November through April.

Workshops topics may include:

• Respite care
• Feeding
• Ventilator maintenance/cleaning
• Transportation
• Navigating relationships with Home Care staff

IL LEND would also like to hear families’ ideas for future support groups and workshop topics. You can share your feedback on this brief online form.

The support group schedule is for the following dates from 5:30 to 6:30 p.m.:

• Nov. 17
• Jan. 19
• Feb. 16
• March 16
• April 20

Here are details for the first session:

• WHAT: Virtual support group/workshop series for parents/caregivers of children and adults enrolled in the Home Care Program.
• WHEN: Nov. 17 from 5:30 to 6:30 p.m.
• TOPIC: Navigating the COVID-19 Pandemic (Note, the discussion portion of the support group will include a facilitator for Spanish-speaking families.)
• WHERE: Virtual via Zoom
• REGISTER: Please sign up online in advance. After registering, you will receive a confirmation email containing information about joining the workshop discussion via Zoom.

A DSCC mom and her friend started the Facebook group to connect with other parents of children with special needs

Thanks to an outing at a coffee shop, hearing aids and an impromptu conversation, two moms with children of similar ages and needs connected.

“I saw her daughter’s hearing aids. My son has them, too, so I just started talking to her,” Lace Mandrell said of her first meeting with Bailey McBurney Imig.

In no time Lace and Bailey were texting, talking and sharing tips, concerns and road trips to specialists.

Their immediate connection led to a new Facebook group called “Monthly Mama Therapy.”

Monthly Mama Therapy aims to help central Illinois caregivers of children with special needs connect with and support one another.

“If you’re trying to understand a diagnosis or therapy, running from appointment to appointment or saving for the next piece of equipment, things can be challenging,” said Lace “We just thought that having a network of moms with a wide range of experiences, ready to back you up on the good days and the bad days, would be amazing.”

Lace is the mother of two sons, Ollie and Auggie. Auggie, 3, is bilaterally deaf and has had cochlear implant surgery. He also has Chiari Malformation and was diagnosed with Waardenburg Syndrome.

“He’s a wild child who rarely stops moving,” Lace said. “He’s sweet, inquisitive and a little sponge excited about learning and soaking up everything around him.”

Auggie is a participant in the University of Illinois Chicago’s Division of Specialized Care for Children (DSCC). He has been enrolled with DSCC since 2019.

Bailey McBurney Imig is also the mother of two: Paxton, 3, and Parker, 2 1/2. Parker is deaf and has undergone multiple screenings and tests. There is still no diagnosis for her other conditions.

“With all of the testing and so few answers, I feel like she’s probably that one in a million child who will have a diagnosis named after her,” Bailey said. “But, despite all her complications, Parker is a tiny, little bundle of joy who loves attention. She’s an easy-going cuddler who is almost always happy and smiling.”

During their first meeting, Lace and Bailey related to each other right away.

“We just hit it off and I’m so glad. With HIPAA (the Health Insurance Portability and Accountability Act) and concerns for privacy, it can make it hard to connect. Then COVID-19, online therapies and everything else got thrown in,” said Lace. “It’s hard to do this stuff alone. It can get really complicated and overwhelming.”

The more Bailey and Lace talked, the more they wanted other moms in the “same or similar boat” to have a safe space where their kids could connect and they could relax, share and recharge. The seed for Monthly Mama Therapy was planted.

Monthly Mama Therapy has a private Facebook page and hosts meet-ups at local parks, coffee shops and other venues in the Champaign and Bloomington areas. Conversations online and in-person may range from accessible parks and walking trails to experiences with therapies or the transition to school.

The group promotes “therapy” and the importance of caregivers taking care of their own needs, too.

“The online community is really growing. When someone asks a question, the support and responses have been great,” said Bailey. “Our ultimate goal is to build an in-person community that’s just as strong.”

Monthly Mama Therapy hopes to continue growing online and meeting in person when the weather turns cool at central Illinois locations where distancing is possible.

“Our wish list includes adding some veteran parents who are willing the help the ‘newbies’ navigate and prepare for the transitions ahead,” said Lace. “We’d also love to add activities like exercise or yoga to do together.”

For more information, visit the Monthly Mama Therapy Facebook page.

A brief survey for Home Care Program families will help us improve service and support

Attention all families in the Home Care Program! We want to know how well your family’s nursing agency is meeting your needs.

The University of Illinois Chicago’s Division of Specialized Care for Children (DSCC) team has put together a short, 10-question survey for families to complete.

We will not share your individual survey responses with anyone.

There is no requirement to share your name or your child’s/participant’s name. Entering this information is completely optional.

We will group your survey responses with those from other families to better understand how rate increases are affecting nurses working in the home.

Our ultimate goal is to improve the services and support available for DSCC participants with complex medical needs.

Please note this survey is only for families enrolled in the Home Care Program who receive in-home shift nursing services.

You can fill out the survey at https://uic.ca1.qualtrics.com/jfe/form/SV_85Pqs6nSdnHb7ds.

The survey is available in both English and Spanish.

The deadline to complete the survey is Oct. 19.

We appreciate your feedback and partnership!

Jessica Wolff teamed up with her therapist friend to create The Nest Postpartum to provide resources for NICU families at Carle Hospital

As the mother of twin daughters born extremely premature, Jessica Wolff is intimately familiar with the stress and heartache of having a baby in the neonatal intensive care unit (NICU).

One of her twin daughters was stillborn. The other, Lily, was born with complex medical needs and spent eight months in the NICU at Carle Hospital in Champaign.

“Often, I was the only parent there (in the NICU) and there were 20 to 30 other babies there,” Jessica recalled. “There are so many barriers that families face while in the NICU, whether it’s transportation to be able to be there for their baby every day or access to meals for the rest of the family. (NICU parents) often have to leave the NICU early to go home for their other kids and make dinner and make sure everyone is fed.”

Jessica, who is a social worker, talked about these experiences with her good friend Paige Raab, who is a pediatric physical therapist. Paige works closely with many NICU families. She also had two traumatic births herself that resulted in NICU stays.

Both women talked about the disparities they saw in the NICU and decided to do something to help. Paige proposed starting a nonprofit foundation, and The Nest Postpartum was born.

“There is definitely a hole we noticed in community services (for NICU families). Paige came to me with the idea, and we built it from the ground-up,” Jessica said.

The Nest Postpartum aims to provide services such as transportation, lodging, prepared meals, care coordinator check-ins and links to other community support programs for families staying in Carle’s NICU.

“We are hoping to provide transportation resources, whether public transportation, gas gift cards or access to rideshare programs and then we’re going to provide families with premade ready-to-cook or ready-to-eat meals. And if the (Carle Auxiliary) Guest House is unable to accommodate a family, we’ll provide hotel stays to bridge that gap,” Jessica said.

The Nest Postpartum also will provide care coordinators who are NICU moms themselves and/or have a healthcare background. These care coordinators will check in weekly with Carle NICU families to connect them with resources or provide emotional support.

Jessica and Paige started fundraising for The Nest Postpartum over the summer. The nonprofit will officially launch on Oct. 4.

“We’ve had amazing, overwhelming community support,” Jessica said. “The NICU staff themselves are super excited and the social workers we’re working with through the hospital are excited to have these resources available.”

The Nest Postpartum will initially only take referrals from Carle social workers. Jessica said interested families in need can reach out to their hospital social worker or tell their bedside nurse.

Jessica said she is thrilled to provide a valuable service to families experiencing similar struggles as her own.

Her daughter, Lily, now 3, came home relying on a ventilator to breathe. She has been enrolled with the University of Illinois Chicago’s Division of Specialized Care for Children (DSCC) since she was an infant. She has received in-home nursing services through the Home Care Program. DSCC operates the Home Care Program on behalf of the Illinois Department of Healthcare and Family Services (HFS).

“We really enjoyed having the support of the Home Care Program. Coordinating the medical benefits and medical supplies and nursing was really a full-time job while keeping her alive was a full-time job for me,” Jessica said. “DSCC has been really important in making sure that Lily is home and successful.”

Jessica said she hopes The Nest Postpartum will provide other NICU parents the connection and camaraderie that’s been so beneficial for her.

“Having the support and the community of other parents who have lived this has been absolutely invaluable. I found myself for eight months only being able to focus on Lily and her survival. Coming home from the NICU was equally overwhelming because of her intense medical needs. We ran an ICU out of our house for over a year until she was able to come off the vent a bit,” Jessica said.

“To find these other mothers who walked the same path has really been life-saving for us.”

To learn more about The Nest Postpartum, visit https://www.thenestpostpartum.org/.

You can also watch local media coverage about the non-profit:

• Two NICU moms launch nonprofit group, The Nest Postpartum, to help other NICU families in need
• NICU Moms form non-profit, The Nest, to help other NICU Families at Carle

Families have until Oct. 2 to provide feedback on several updates to the Home and Community-Based Services Waiver for children who are medically fragile and technology-dependent

The state invites families to provide feedback on several proposed amendments to the Home and Community-Based Services waiver for children who are medically fragile and technology-dependent (MFTD).

The Illinois Department of Healthcare and Family Services (HFS) operates the MFTD waiver. Many families in the Home Care Program have children who receive services through the MFTD waiver.

HFS has announced the following proposed amendments:

• Increase the Placement Maintenance Counseling rate from $50 to $86.28 to be more consistent with the Illinois Department of Human Services’ rates for counseling services.
  
• Update the cost projections for In-Home Shift Nursing and Certified Nursing Assistant for the waiver’s fifth year to account for recent rate increases and individuals over age 21 continuing to receive waiver services.
  
• Add Electrical Assessments to the current service definition under “Environmental Accessibility Adaptation” as an available option.
  
• Add Generators to the current service definition under “Environmental Accessibility Adaptation” as an available option.
  
• Lower the required number of bids for vehicle modifications from three to two.

HFS now invites the public to comment on these proposed amendments. (You can read the public comment notice on the HFS website.)

To review the full waiver amendments, you can:

• Download and read and/or print a hard copy of the amendments from the HFS website.
• Call (217) 524-4148 to receive a hard copy.
• Review copies at Healthcare and Family Services offices at :
  
  • 201 South Grand Ave. E.,
    Springfield, IL 62763
    
  • 401 S. Clinton
    Chicago, IL 60607

The deadline to provide feedback is Oct. 2.

You can submit feedback in two ways:

• Via email at HFS.HCBSWaiver@illinois.gov
  
• Via mail to the Illinois Department of Healthcare and Family Services, Attention: Waiver Operations Management, 201 South Grand Ave. E., 2FL, Springfield, IL 62763

HFS and the University of Illinois Chicago’s Division of Specialized Care for Children will review the comments and respond to them.

We will then submit comments to the federal Centers for Medicare and Medicaid Services as part of the amendment approval process.

Illinois awaits approval to use FMAP funds for improving care for our Home Care Program participants

Illinois has developed a plan to use increased federal funding to improve support and services for children and youth with complex medical needs.

This plan incorporates valuable feedback from our participants, stakeholders and staff members at the University of Illinois Chicago’s Division of Specialized Care for Children (DSCC).

The extra funds are part of the American Rescue Plan Act of 2021. The act gives Illinois a temporary 10 percent increase in federal funding for home and community-based services (HCBS). This 10 percent increase is called the Federal Medical Assistance Percentage or FMAP.

Illinois must use the FMAP funds to enhance, expand or strengthen HCBS.

HCBS includes the waiver for children who are medically fragile and technology-dependent (MFTD). Therefore, the FMAP can provide extra funds to help support children and youth in the Home Care Program and their caregivers. FMAP improvements will also affect individuals who receive in-home, shift-based nursing as a non-waiver benefit.

In late May, DSCC asked our participant families, staff and community partners for input on how to use the FMAP funds. We also sought feedback on DSCC’s ideas for improving HCBS for Home Care participants.

We shared the input we received with the Illinois Department of Healthcare and Family Services (HFS). We then worked with HFS to develop Illinois’ proposal for using the FMAP funds.

Ideas included in the proposal are:

1. Expand consumer direction (the ability for consumers to make choices about the services they receive) to allow unlicensed family caregivers to be paid caregivers. DSCC would then work to develop health and safety monitoring, assist with training and more. This change could provide caregiver relief to a large number of Home Care families.
   
2. Develop a nursing portal where open shifts could be posted by nursing agencies and families. This portal would be visible to home nurses and families. The intent is to try to improve nursing coverage for open shifts across the state.
   
3. Improve training and access to training to help improve the quality of nursing care in the home. This initiative would include developing training that builds on and complements existing training for caregivers in the home.
   
4. Increase the in-home respite nursing rates to match the rates from the 2019 nursing rate increase.
   
5. Increase the child-specific training rates to match the rates from the 2019 nursing rate increase.

HFS submitted Illinois’ proposal to the federal Centers for Medicare and Medicaid Services in July. We are now awaiting its approval and planning for the necessary next steps.

It is important to note that though the FMAP funding increase is temporary, we hope to make many of these changes permanent. We are discussing how to handle any relevant long-term costs with HFS.

We are excited about this opportunity to improve care for our Home Care Program participants.

Thank you to everyone who took the time to share their ideas and feedback with us.

We will continue to share updates on the status of Illinois’ proposal as they become available.

Haley Shropshire of the Peoria Regional Office is biking 250 miles as part of nationwide Stop Soldier Suicide Cycling Challenge in July

Four months ago, Haley Shropshire, a Division of Specialized Care for Children (DSCC) Care Coordinator from the Peoria Regional Office, got a new bike.  She hadn’t owned a bike since she was 10. Now, she’s part of the Stop Soldier Suicide Nationwide 250 Mile Cycling Challenge during July.

The challenge is raising awareness and funds to end soldier suicide.

“I’ve grown up surrounded by family members and other individuals who have served in the military. My father served seven years in the Army infantry and although he didn’t die of suicide, it’s important that I show my support and respect for what he did to serve our country,” explained Haley. “I don’t usually do Facebook fundraisers, but I love this cause and just had to go for it!”

According to the Stop Soldier Suicide website, veterans are at a 50 percent higher risk of suicide than their peers who have not served. Stop Soldier Suicide’s mission is to reduce the military suicide rate by 40 percent by 2030.

Funds raised through their Facebook challenges provide direct support to service members and veterans at risk for suicide.

Haley cares deeply about this cause and is hoping others will visit her Facebook page for more information, to check on her progress or make a donation by Aug. 7.

“Riding my bike is just so freeing! I’ve really been encouraged by the great comments and support,” Haley said “I set up my page in June and was surprised when I passed my goal before I started riding. I bumped up my goal and am really hoping I can pass it again. It’s all been so amazing!”

Haley is fast approaching her current fundraising goal of $500 and has logged more than 143 miles.

“I’m riding because I want to help and I want service members who are struggling to know there’s help,” Haley said. “I would be thrilled if my challenge could raise $1,000. That would help so many get the help they need.” 

Haley also encourages any interested DSCC staff members to ride or join her on Facebook.

“I may be riding my bike alone, but I’m not going solo. It’s been incredible,” she said.

If you know a struggling service member, veteran or military family member, Stop Soldier Suicide can help. If you’re a veteran or service member in crisis, please call (844) 317-1136.

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.”