“We all feel like she has her life back.”

Kimmy spent her first 23 months of life in a hospital.

The toddler was born with congenital scoliosis so severe that it deformed her spine, chest and ribs and prevented her left lung from developing. Kimmy could not breathe on her own and her ribs threatened to crush her lungs.

Kimmy eventually underwent lifesaving surgery to receive a vertical expandable prosthetic titanium rib (VEPTR). The VEPTR device helps straighten Kimmy’s spine and separates her ribs so her lungs can grow. The VEPTR must be expanded regularly until Kimmy stops growing.

After the VEPTR was placed, Kimmy had to undergo a successful expansion surgery before doctors gave the OK for her to go home. It was welcome news but also nerve-wracking to plan for Kimmy’s arrival and care at home, her mother, Mayra, recalled.

“We were just lost. We had no clue. We just wanted to get her home but we didn’t know what it was going to take to get her home safely,” Mayra said.

That’s when their DSCC care coordinator, Margaret, stepped in and began working with Kimmy’s family and doctors to prepare for Kimmy’s homecoming and help it go smoothly. She also worked with charities to help cover the cost of travel expenses for her arrival home and for subsequent surgeries.

“She helped us out so much and would call every day,” Mayra said. “If we didn’t have DSCC, I don’t know who would’ve helped us.”

Later, when Kimmy’s family moved into a renovated older home, Margaret brought in an electrician to replace the power box and install new outlets to support Kimmy’s breathing machines. The house also had issues with ants and spiders, so Margaret set up regular exterminator visits. DSCC ensured all costs were covered under the Medicaid waiver program for children who are medically fragile and technology dependent.

Kimmy is now almost 4 years old and thriving beyond her family’s highest hopes. Mayra says she’s seen a huge difference in her daughter’s progress and happiness since she has been home.

“She’s now standing, walking around and running and she goes to school and is learning all of her little friends’ names,” Mayra said. “We all feel like she has her life back.”

“It absolutely makes a difference.”

Mikey is an outgoing 10-year-old who loves to play with his fifth-grade classmates. His mother, Michelle, credits the Division of Specialized Care for Children (DSCC) with helping Mikey receive the orthotics and equipment he needs to keep up with his friends and stay active and happy.

When Michelle was 20 weeks pregnant, Mikey was diagnosed with spina bifida – a birth defect that caused an opening in his backbone and prevented his spinal cord from developing properly – and hydrocephalus, a buildup of cerebrospinal fluid inside the brain. Mikey required surgery immediately after birth to close his backbone. Less than two weeks later, he received a shunt to drain the excess fluid from his brain. His first year was subsequently filled with numerous doctor visits, a shunt revision surgery and the start of physical and occupational therapy to strengthen his muscles.

Mikey is able to use his legs but requires the use of orthotics and crutches to walk. Michelle said DSCC covered the cost of Mikey’s first set of orthotics at age 1 and has been a huge help to her family ever since.

“Our insurance does not cover a lot for Mikey – they don’t cover his catheters, they don’t cover his orthotics, and those are big things that could run thousands of dollars. To have DSCC be able to cover those costs for us has been a huge lifesaver,” Michelle said. “Our Care Coordinator, Sarah, is amazing. She is one of the easiest people I have ever worked with. She follows up with me on how Mikey is doing, how Mikey’s appointments are going and if there is anything we need.”

Sarah was also able to fix communication problems that arose when the Lewinskis recently moved to a new clinic for Mikey’s care.

“She took the reins and was the middleman, making the phone calls and getting stuff done,” Michelle said. “If I have a question about anything, I know that I can call her or just send her a quick email and she will answer my question as soon as she can. It absolutely makes a difference.”

“There’s not a cure, but they still can live a good life.”

Brothers Garrett, 19, and Gavin, 15, share much in common.

The adventurous duo enjoy power soccer and adaptive swimming, sailing, cycling, bowling and rock climbing but also love to relax with an audiobook or listen to music.  They naturally attract people with their poise and confidence, and both are “handsome as all get-out,” according to their proud mother, Gina.

“I joke and tell people, ‘It takes a lot to keep them pretty,’” Gina says with a laugh. “They have 14 different doctors. There is a serious team behind them.”

Garrett and Gavin were born with a rare genetic neurodevelopmental disorder called Pelizaeus-Merzbacher Disease that affects their vision and ability to eat, speak, breathe and move.

Garrett was diagnosed when he was 3 years old, just a month before Gina and her husband, Gordon, found out they were expecting Gavin. An amniocentesis before Gavin was born showed that he, too, had the disease but would require greater medical support than his brother.

Both Garrett and Gavin use power wheelchairs, while Gavin has a tracheostomy tube and a gastronomy tube. The first four years of Gavin’s life were very trying and doctors didn’t expect him to live, Gina recalled.

The Joneses first learned of the Division of Specialized Care for Children (DSCC) during Gavin’s hospitalization for tracheostomy surgery, when he was only 1 year old. Gina and Gordon realized they could benefit from the support and care coordination we provide.

The Jones’ care coordinator helped them bring nursing care, therapies and medical specialists together by coordinating communication among the many providers involved in Gavin’s health care. She also helped them work through accessibility issues for their home and transportation needs. Their care coordinator connected them to vendors and guided them through the process of getting a wheelchair accessible van and a lift to get in and out of the house.

“If you don’t have information, you are not able to navigate the travels and travails of being a caregiver for people with a disability,” says Gordon, emphasizing the importance of the ongoing information the family receives from their care coordinator.

“To have an organization that really tries to focus on the family itself, and tries to make the family’s job, even though it’s a difficult one, run more smoothly, that’s what Specialized Care for Children really does,” Gordon says.

Garrett joined his brother, Gavin, in the program in late 2014 after his medical needs grew more complex with age. Both young men now receive skilled in-home nursing care.

“We can’t change the disease. There’s not a cure, but they still can live a good life,” Gina says.

The Joneses incorporate fun and adventure into their daily lives as often as they can. Together, they explore their city and neighborhood; take in cultural events and activities, such as outdoor classical music concerts, operas and plays; camp; play adaptive sports and take cross-country road trips.

“It takes a lot of doing to try to organize what you have to do at home and try to fit outside things in, but it’s necessary because if you don’t continue reaching…you are not going to get anywhere,” Gordon says.

For five years, Gina organized the annual Jones PMD Walk ‘n Roll, a 2.5 mile stroll and roll (wheelchairs, wagons, strollers, and children’s bicycles) to support research, raise awareness and provide support for children who have Pelizaeus-Merzbacher Disease. Gina also became a new part-time Family Liaison for DSCC in early 2017.

Gina and Gordon hope their family’s experiences can help others.

Gordon’s advice to families: “Don’t be afraid to pick up the phone, to read, to look at the computer, because all of these skills you are going to need to navigate the maze effectively.”