12-year-old at center of disabled care fight, dies from pneumonia

Karolina Gonzalez was a fighter right out of the womb. Her will to live and her mother’s battle to give her a fair chance unfolded amid a fight over the state’s commitment, or lack of, to the care of profoundly disabled children.

The struggle continues, but Karolina will not see it through to its conclusion. She died Jan. 1 of pneumonia. She was 12 years old.

Marcia Saladin, Gonzalez’s mother, battled state health administrators in a quest to win additional in-home care for her daughter, who suffered from the rare genetic disorder Marshall-Smith Syndrome, and to avoid having to place her in a nursing home.

The United States government has sued the state, claiming its refusal to offer round-the-clock in-home assistance essentially forces parents such as Saladin to permanently institutionalize their children. Saladin refused to go that route.

Saladin’s appeal was reported by the Miami Herald in December 2012, and was ultimately successful as the Agency for Health Care Administration lifted its requirement that parents and other relatives perform certain medical tasks, effectively making them both parent and ’round-the-clock caretaker.

The state agreed to pay for trained professionals to perform the services and tasks, reducing the financial burden on families.

“We had proven how delicate these children are and the need for care,” Saladin said.

Howard Talenfeld, the attorney who handled the appeal, said: “She inspired us all to fight for her and other children just like her. This was a little girl who couldn’t walk, who couldn’t talk, but she touched all of our lives.”

Karolina survived longer than most children born with her disorder. Many who suffer from it do not live beyond 3. The syndrome is marked by certain facial features, and can cause severe breathing impairments and irregular bone maturation.

Her mother said Karolina was diagnosed at age 4.

Saladin said her daughter was always smiling and quick to laugh, despite undergoing 21 different surgeries over her short life. She credits her positive outlook with helping Karolina survive as long as she did, and would advise others to follow her example.

“They have to be positive, they have to be happy, because it’s going to reflect on their process,” Saladin said.

Karolina and her family were vacationing in Aruba when she fell ill with a cold that developed into pneumonia. Her mother said that until her last day her daughter was always pleasant to be around, and her children and husband loved to make her smile.

“They never treated her like she was different. Nobody felt sad around her. She made people feel happy,” Saladin said. “She was appreciative of life. She couldn’t speak, but I think everyone who looked in her eyes got that feeling.”

Karolina’s mother said she hopes to find the strength to remain an advocate for disabled children’s care and for those afflicted with Marshall-Smith Syndrome. Until then, she thinks her daughter’s life will leave a lasting legacy.

“One person told me that God lent me an angel, and I was blessed to get to know her and help her,” Saladin said. “I’m very blessed that I was able to be her mother.”

Survivors include an older brother, Kyle Luidens; an older sister, Sabrina Luidens; and Karolina’s father, Joaquin Gonzalez.

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