Zach

Written by

Zach’s Story: Darla and Eric never missed an episode of “Lost.” But on May 4, 2010, when their son, Zack, arrived six weeks early, not only did they miss the episode, they were thrown into their own unknown world, filled with hospitals, surgeries and more medical terminology they could ever image.

When Zack was born, he weighed four pounds, three ounces. He was breathing on his own and his Apgar scores were good. Two days later that quickly changed. His temperature dropped and doctors discovered severe problems with his intestines. He was flown to Children’s National Medical Center for emergency surgery.

Zack spent his first year of life in and out of hospitals. He had a handful of surgeries. He had an ostomy bag and a feeding tube. “The whole experience was very traumatic,” said Eric. “But that was our life and our normal for a very long time.”

Today Zack is a rambunctious three-year-old, who enjoys playing games on his Leap Pad, spending time outdoors and playing with his dogs, China and Romeo. He is healthy and right where he should be on the growth charts. “He eats like crazy,” Darla said. “You would never know he had problems.”

Our Impact: Through The Coordinating Center, the Slade family received assistance coordinating nighttime help, obtaining medical supplies and scheduling meetings and appointments. These services helped the Slade family live a comfortable life while striving for Zach’s best health.

Christine

Written by

Christine’s Story: One would never know looking at her abstract paintings that Christine has not seen color for 28 years.

Christine fell in love with art in middle school. Christine wanted to share her love of art with others and decided to study art education in school. During her senior year of college, Christine suffered her second brain hemorrhage —the first one being when she was a senior in high school. The second hemorrhage was severe, leaving her in a coma for eight months. When Christine came out of the coma, she had lost her eyesight, speech and the use of her right-side extremities.

During the next three years, Christine learned sign language, Braille, how to speak in brief phrases, to do things with her left hand and arm and to walk with the assistance of a cane and braces.

One thing Christine never lost was her love of painting and the desire to do it. With the help of local artists and mentors, Christine began painting again. She now uses the colors and shadows she sees within to create paintings. Christine explains that she can see certain lights and shades of color depending on the weather.

The home that Christine shares with her parents is filled with her artwork—some as far back as the seventh grade. The bedroom once occupied by her younger sister is now Christine’s art studio. The room is filled with colorful canvases. Christine’s paintings also can be found in galleries, art shows and in buildings throughout Frederick.

Our Impact: Christine’s coordinator, Beth, helped connect her to resources that could help her continue her passion for art and remain active in the community. When Christine is not painting, she likes exercising at the local YMCA and volunteering at Daybreak Adult Day Services, a place she attended during her own recovery.

Malika

Written by

Malika’s Story: At 20, Malika sustained a gunshot wound that left her paralyzed from the chest down. She spent one month in the intensive care unit and four months in a rehabilitation facility. Malika worked hard in rehab so that she could return home. “My daughter spent a lot of time at the facility, watching everything I did,” Malika said. “I knew I had to work hard and make her proud.”

While at the facility, Malika joined a peer-mentoring program to help other patients with similar injuries. “I didn’t have someone tell me what to do or how life was going to be different,” she said. “I now can help women understand what it is like to be a mother with a spinal cord injury.”

As part of the mentoring program, Malika spent time visiting with other patients at the facility. She would offer them advice or just listen to their stories, deeply understanding what they were experiencing. Once Malika was out of the facility and in her home, she continued to spend time with the individuals. The mentoring program has since lost funding, but Malika’s peers still call her. Now, at age 37, Malika is starting her own blog, called “Sitting Pretty Girl,” so that she can continue to offer support. “Just because the program doesn’t exist, I didn’t want them to lose their spirit,” she said.

While Malika has provided motivation and assistance to others, she says The Coordinating Center has done the same for her.

Our Impact: Malika’s coordinator helped her obtain necessary medical equipment, find an accessible home for her family and increase the amount of nursing hours she receives. “Racine has gone above and beyond her call of duty,” Malika said.

Kayleigh

Written by

Kayleigh’s Story: On January 1, 2014, Kayleigh was born at Mercy Medical Center weighing just 11.64 ounces. Prior to being born, Kayleigh experienced intrauterine growth restriction. This meant Kayleigh didn’t have the space she needed to grow and wasn’t getting enough blood, oxygen or nutrients.

At 26 weeks, Nicole experienced preeclampsia and kidney and liver failure. Doctors made the decision that if they didn’t deliver Kayleigh immediately, Nicole’s life would be in danger. Delivered by C-section, Kayleigh entered the world lifeless. It took several attempts to intubate her before she let out her first cry.

Kayleigh spent 10 months in the hospital. When she came home, she was ventilator dependent, on oxygen, had a feeding tube and required 21 medications.

At age one, Kayleigh was enrolled in the Rare and Expensive Case Management (REM) Program and assigned to The Coordinating Center. Nicole said she is grateful for The Coordinating Center’s support and guidance. “It helped me be a better mother.”

In 2015, Kayleigh was taken off of the ventilator, at least four years earlier than doctors predicted. Kayleigh and her family continue to work toward health milestones. Every week Kayleigh has speech therapy, occupational therapy, a developmental assessment, physical therapy and feeding classes.

Our Impact: Kayleigh’s Coordinator advocated for additional nursing hours to simplify the family’s schedule. Kayleigh’s Coordinator also helped the family locate transportation resources to allow Kayleigh to attend a day program.

Eric

Written by

Eric’s Story: After a stroke, Eric spent three years in a nursing facility. Left with limited movement on his left side and memory problems, Eric longed to have his own place and be near his son. While at the nursing facility, he enrolled in the Home and Community-based Options Waiver Program and was assigned a Supports Planner and Housing Coordinator from The Coordinating Center.

When Eric first met Dennise, his Housing Coordinator, he was skeptical. He did not have much money, he was missing essential documents and other housing programs had let him down before. With Dennise’s help, Eric obtained the paperwork he needed.

With the help of Dennise and the 811 Project Rental Assistance Program, Eric moved into his apartment in February 2016. Now Eric has a place of his own and a bedroom for his son. On the weekends, they enjoy doing father-son activities, including going to the playground in the community and taking trips to the nearby shopping center for dinner and movie nights.

Our Impact: Eric’s Housing Coordinator helped him obtain the paperwork needed to rent an apartment and told him about the 811 Project Rental Assistance Program. Eric also received help obtaining necessary items for his new home through the Money Follows the Person (MFP) fund.

Rachel

Written by

Rachel’s Story: A diagnosis of Autism certainly does not get in the way of some of Rachel’s favorite pastimes. She enjoys horseback riding, shopping, looking for new movies to watch, hanging out outdoors, and spending quality time with her family and friends. Rachel has a special soft spot for her dog who is a most patient and friendly companion.

Diagnosed as a toddler with Autism, she has been working hard ever since to develop her skills and highlight her strengths. Rachel was nonverbal until the age of five and now utilizes both spoken word and sign language to communicate best with her family and friends. Rachel also lives with severe food allergies and Celiac disease, an autoimmune disorder that can lead to damage of the small intestine. Rachel’s family continues to explore eating habits that could help her lessen and best manage her food allergies.

With the help of her family, her Coordinator and other valuable resources like friends and mentors, Rachel is learning more about important skills including how to communicate and behave effectively with others, how to express her emotions and how to prepare her own food. All of these skills are important for helping Rachel to thrive, and her family is happy to see her continued growth and development.

Our Impact: Support from The Coordinating Center has made life easier for Rachel’s family. The family is able to spend more time together thanks to a well-coordinated schedule while Rachel receives the resources needed to continue working on language and life skills.

Chuck

Written by

Chuck’s Story: At 21 years old, a major car accident left Chuck paralyzed and looking to rediscover his love for music. Questioning his recovery, Chuck admits he was “not a happy camper.” Then all at once he had a change of heart. “It was like a switch,” he says. “Life works better when you appreciate people.”

Chuck spent more than a year in the hospital and was bedridden at home for another year after that. When he finally felt ready to begin physical therapy, he took to it with everything he could muster. With each day, Chuck began regaining control of his legs and arms. After six years, Chuck was once again able to play his beloved drums. Now Chuck makes regular trips to the library to play out front. He even brings extra drums so the people passing by can stop and join in. Chuck credits The Coordinating Center with playing a huge part of getting him back out in public again, both physically and mentally. “No way I’d be where I am without The Coordinating Center.”

In May 2016, Chuck earned an Associate’s Degree in Applied Science from Carrol Community College specializing in computer-aided drafting. In addition to graduating, Chuck found another success that day: he achieved his once-daunting goal to walk at graduation. It took years after the accident for Chuck to even consider walking again. Assisted by a gait trainer, Chuck began practicing his walk at his physical therapy sessions. After a year, he had walked a total of 8 miles. On the day of commencement, each graduate was called to walk across stage and receive their diploma. Just when everyone thought the ceremony was complete, the announcer called Chuck’s name. The audience erupted in applause as Chuck began walking carefully across the stage with an infectious grin.

Our Impact: Chuck’s Service Coordinator helped connect him to a physical therapist who understood Chuck’s goals. His Service Coordinator also encouraged him to get involved in the community. Now Chuck makes regular trips to the library to play his drums outside of the building and connect with members of the community.

Luke

Written by

Luke’s Story: While Janet’s newborn son was a patient at Kennedy Krieger Institute, a nurse often spoke to her about the Model Waiver Program. “I kept telling her I had insurance and I didn’t need it,” she said. “Finally, I took the information to get her off my back.” Four years later, Janet is so very grateful for the recommendation.

Janet’s third son, Luke, was born with paralyzed vocal chords and problems with his diaphragm.  After 17 days in the NICU, Luke came home on oxygen. Within 10 days, he was admitted to the hospital due to low oxygen levels. In May 2009, Luke received a tracheostomy tube. “We thought he would maybe have it for a year,” Janet said. “Instead this stupid piece of plastic turned our lives upside down.”

Luke has undergone four surgeries. He has spent months in the hospital. Common colds could be debilitating. But through it all, Janet, her husband, George, and their children were able to maintain a normal life thanks to family, friends and the Model Waiver program. “I always said we were going to continue to live our lives as normal as possible,” she said. “Luke went to preschool just like any three-year-old. The only difference is a nurse went with him.”

Exactly four years to the day when Luke had his trach inserted, it was removed. “We have our lives back,” Janet said. “We are free from nurses. We are free from fearing. Luke feels free. We aren’t constantly on him.” One of Luke’s prized possessions from his four-year experience is his Trash the Trach trophy that Janet’s mother had made for him. After witnessing Luke’s reaction to his trophy, the idea of “Luke’s Trophies for Trachs” was born. Luke and his family want to give other children the same joy he experienced when he received his trophy. At a Trash the Trach party for Luke, donations were collected so the family could purchase trophies for children at Johns Hopkins when they reach their milestone of becoming trach free.

Our Impact: Support from The Center helped Luke and his family live a comfortable and familiar life while adjusting to Luke’s health needs.

Cara

Written by

Cara’s Story: At 21 years old, Cara has her dream job as a nurse. Diagnosed with Von Willebrand, a blood clotting disorder, at the age of five, she knows what it is like to spend time in a hospital. “I practically lived in the hospital and nurses made it OK.”

Since the blood disorder is rare, Cara sometimes had to travel hours to be seen by doctors who were familiar with the disorder. “No one around here would see me because they didn’t know how to help me,” said Cara.

Due to the severity of the blood disorder, Cara could not always play with other children her age; she could not participate in activities that could potentially cause harm. Cara could not ride a bicycle, play sports or ride horses, which was especially difficult since her family lives on a farm. Even a stubbed toe would cause Cara to bruise up to her knee and meant a trip to the hospital for an infusion.

Nothing has stopped Cara from achieving her dream of becoming a nurse. In 2016, Cara graduated from nursing school with straight A’s. “People would tell me I shouldn’t go into the medical field because of my compromised immune system or that I couldn’t do it,” Cara said. “But I can. Nothing should hold you back.”

Our Impact: Cara’s Clinical Care Coordinator helped her locate physicians and an oral surgeon who was familiar with similar blood disorders. Being connected to the right providers has helped Cara manage her health, even in complex environments like working in the ER.