Xavier

At 16 months old, Xavier is into everything that makes noise and moves. He’s also a big fan of books that play nursery rhymes and his mother’s home cooking! His mother Davida has become quite the chef, watching YouTube videos to make new food for Xavier and her family.

Xavier’s doctors describe him as a miracle baby, having survived a traumatic brain injury at birth that took four months to uncover. While the first 16 months of Xavier’s life have not been easy, with doctor’s visits almost every day to address his complex medical needs (i.e., seizure disorder, GERD, torticollis, plagiocephaly, eczema, and food allergies), his mom says she gets through it with prayer. “Prayer has been a resounding force my strength. At 2:00 a.m. when your son has a seizure, prayer gets you through it. I also journal a lot and contribute to motivation groups for moms,” said Davida.

Davida says caring for Xavier is very busy, with numerous therapies for his development (physical, occupational and speech) and specialty visits for tests and exams. As a mother of two children and with Xavier’s father in the military, Davida has had to learn how to be effective with time management. One of the biggest challenge Xavier’s family faces is fitting in all of Xavier’s medical appointments on top of caring for their 10-year-old daughter, Amber who is active in school choir and other activities. “We schedule our life and our days around Xavier’s healthcare. It’s difficult, but having a routine is key,” says Davida.

When you have a child with complex medical needs, you want the very best care for your child. Sometimes this means having to travel to specialists outside of your local community, including out of state. Xavier’s family has had to travel numerous times to Children’s National Hospital in D.C. and Children’s Hospital of Philadelphia (CHOP) to see a multitude of specialists. “It isn’t always easy, but I’m willing to travel longer distances to get to a preferred provider,” says Davida.

Davida and her family are so grateful they were referred to the Rare and Expensive Case Management (REM) Program when Xavier was eight months old. Prior to enrolling in the REM Program, Xavier’s specialists were in many different insurance networks and states. The cost of care was a burden, with constant out-of-pocket copays. Having enrolled in the REM Program, Xavier and his family now have access to more providers in network and are able to afford the cost of Xavier’s care.

With the REM Program, Xavier and his family have access to a Clinical Care Coordinator. Davida states, her coordinator Mary is very considerate and responsive, “she’s always helping and lifting our load. Mary helps us with a lot with completing paperwork and locating resources for Xavier, including hospital grade items such as a weighted wagon, orthoptic shoes, and a pelvic stabilizing walker to help Xavier learn to walk.” Knowing the needs of the family and with the assistance of The Coordinating Center’s Family Resource Fund, Mary was also able to help his family purchase an Abiie highchair, which will grow with Xavier as he gets older. “Mary is so understanding of our situation and our family’s needs. We are incredibly grateful to her and The Coordinating Center,” said Davida.

Davida’s advice for someone considering services from The Coordinating Center is to pursue it. She says, “you don’t know that you don’t have something until you get it and realize it has a huge significant on your life. At first sight it was frustrating because having to doing paperwork and meeting more people and should I add another thing to the pot. It’s a road map almost like Rosetta stone (like going to another country and not knowing the language) for understanding and learning what you don’t know.”

Ari

Becoming a parent of twins is a life changing event. There’s excitement, anticipation, and at the same time fear, as the arrival of multiple newborns can bring medical, logistical, financial, and emotional challenges. Now imagine your newborn in the neonatal intensive care unit. Suddenly you are forced to navigate intensive medical care for your newborn without any support. That is what it was like for Brianna and Fred, her husband, whose son Ari was born with severe kyphosis, scoliosis, and a chronic lung condition. “I was so discouraged when we brought Ari home from the NICU because we were thrust into this situation with very little warning and hardly any support. We also had another preemie at home to care for as well,” said Brianna.

The first three years of Ari’s life, Brianna and Fred faced a lot of challenges with coordinating around the clock care and navigating insurance. In 2019, Ari had a major spinal fusion, which left him unable to walk or stand. Ari requires a wheelchair and has to wear oxygen at night as he has chronic lung disease and requires a g-tube. With no insurance coverage for nursing services, Ari’s dad left his job. The move from a two-earner household to a one-earner household was tough, but necessary as Ari could not be left with someone without a medical background or training and an out of pocket, private duty nurse was not affordable.

Thankfully, Ari’s dad took the time to complete the Maryland Model Waiver application, a daunting task that Brianna was unable to take on as a new mother of twins. Once enrolled into Model Waiver, Ari and his family were linked to a Clinical Care Coordinator at The Coordinating Center who helped Ari’s parents obtain the maximum covered nursing services available under the Model Waiver. Not only was Ari’s mom able to return to work, but Ari got to go to school with nursing services secured by his Coordinator and covered under the Model Waiver.

“Providing care for a person who has long-term skilled care needs is a full-time job with no relief. Our lives revolve around Ari and his care needs. We interact with others sparingly, we rarely engage socially with other people, I have a pantry section of just medical supplies, and we have spent hours upon countless hours dealing with health insurance issues.” Having in-home and in the classroom nursing services is a game changer! Ari, who is now four-year’s old is thriving. “Ari is very bright. He is fascinated by robots, and he loves playing with his twin sister, Sloane, and his older sister, Lennah. Being an extrovert, Ari makes friends easily. Ari is also very particular about his care and knows what he wants, what he doesn’t want, and isn’t shy about telling us,” says Brianna.

Brianna says, “My advice to others considering The Coordinating Center would be to get all of your initial paperwork completed, even if it feels futile or insurmountable. Our coordinator moved several mountains for us to ensure Ari got the help he needed, and we are forever grateful!”

Meaghan

Meaghan’s friends and family describe her as hilarious, quirky and one of a kind 22-year-old. Meaghan loves animals, her favorites are horses, cats and fish. Twice a week Meaghan enjoys horseback riding, which she has been doing since the age of seven. When she’s not riding, she enjoys cooking, swinging on her swing set and traveling with her family. Once a week, Meaghan attends a social skills group, which helps her and other young adults living with Autism Spectrum Disorder improve their communication and social skills.

At the age of 13, Meaghan began receiving Autism Waiver services after being on Wait List for nine years. Prior to receiving Autism Waiver services, Meaghan’s family struggled to find appropriate services and supports. One of the biggest challenges was finding reliable and willing childcare providers to care for Meaghan’s significant behavioral challenges and medical needs. While the early years were challenging, Meaghan’s mom says it made her more aware and better prepared, more resilient, compassionate and passionate.

Meaghan and her mom are extremely grateful for their Service Coordinator Lauren, who was instrumental in helping Meaghan and her entire family open a lot of doors. Meaghan’s mom states, “Our Coordinator Lauren helped us navigate through the daunting and confusing aspects of processes, forms, timelines. She was always organized, on time, made things very easy for me. She opened up a world of services that I didn’t know existed. She was a sounding board, a voice of reason and the ultimate professional. Lauren has been an integral part of all of Meaghan’s roadblocks and milestones. She truly cares and it shows.”

In just a few weeks Meaghan will officially transition out of the Autism Waiver to DDA services. When researching options for a new service coordinator, Meaghan and her family chose to continue to work with The Coordinating Center because she says, “hands down, it has changed our lives.”

Christine

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

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

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

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.