A mother’s intuition can be the most powerful force. That proved to be true when Claudia Rosenecker was born. Her mother, Mary, knew something just wasn’t right.
“She wasn’t reaching her milestones, like our older children. She didn’t cry much as a baby, and didn’t smile much either, “says Tom, Mary’s husband and Claudia’s dad. “But, some people would equate that to a good baby.”
Mary pushed for testing, even when doctors told her she had nothing to worry about. “Our doctor ordered Claudia a CAT scan, then an MRI, just to rule out anything,” says Mary.
The MRI revealed hydrocephalus (fluid on her brain), a dysmorphic brain, and that several parts of Claudia’s brain had issues that would affect her speech and movement. “That was just the start down the path of our medical journey with her,” says mom.
One month later she had her first seizure; she was not even a year old.
Then, when she was 15-months-old, she had a seizure so devastating that she almost died. Doctors had her in a drug induced coma for five days at Women and Children’s Hospital of Buffalo. For the next several years, Claudia experienced a magnitude of seizures, a plethora of medical issues, illnesses, and setbacks. Several times, her debilitating condition landed her in the ICU. Eventually, the life-threatening seizures began to settle down when she was five and are now managed for the most part with daily medication.
“After taking her to many specialists and extensive genetic testing, doctors told us she will most likely never walk or talk,” Tom says. “It was beyond devastating for our entire family to hear that.”
Claudia was diagnosed with a long list of conditions including mild cerebral palsy, a seizure disorder, osteoporosis, celiac disease, among many other challenges. Tom and Mary knew their daughter needed to be around other children, like her. With little hope, and a need for answered prayers, they searched for necessary support, and that’s when they found The Summit Center. The Summit Center’s mission is to provide educational and therapeutic services to more than 2,300 children with autism and other developmental, physical, social and behavioral challenges.
“Shortly after being at The Summit Center, she took her first steps…on her own! We were so overcome with happiness because we never even expected that to happen. She just up and went,” says mom.
Claudia was 5-years-old at the time.
Summit also worked diligently through extensive therapy to give her the motor skills she needed to eat solid foods, as prior to that her poor muscle tone prevented her from eating anything other than baby food. Claudia also learned how to use an iPad like a pro, helping her to communicate with her aides and therapists. Claudia was not only gaining her independence, she consistently beamed with joy. She couldn’t have been happier.
But, at the age of 13, she broke her femur and was put in a full body cast for two months, requiring her to be in bed with very little mobility. This was the beginning of a tremendous decline in her physical and emotional health.
“Shortly after her broken femur, our daughter lost the ability to eat, dropped almost half her body weight, and had to have a feeding tube placed in order to survive,” exclaims Tom. “Once again, her life was in jeopardy, and her spirits were crushed.”
The feeding tube was a major learning curve and life adjustment for the family, learning how to properly nourish her because, once again, she lost the ability to eat solid foods. “She was out of school for nearly four months, as we tried everything to get her weight back up and her health back to normal,” added Mary. Eventually, Claudia regained her strength and was able to go back to The Summit Center, but again she had to learn how to walk on her own and eat solid food.
“Her first steps after this long-term illness happened again at The Summit Center, thanks to her 1:1 Aide and Physical Therapist,” says Tom.
Tom explains that he’s seen a world of difference in Claudia since the family found The Summit Center. He says it’s emotional, as a father, knowing that his daughter is receiving unmatched support from her aide, therapists, teachers, and the many professionals of The Summit Center.
“They are by her side all day long – not only have they changed her life, they have changed all of ours too. From the first time she was able to walk or eat, they had such an impact on our entire family. They have opened up endless possibilities for us, allowing her to feel happy, independent and the social butterfly that she is,” says Mary.
When we asked the family what HOPE means to them, Mary says, “Hope is having faith in doing what seems impossible, given the odds, and still pushing forward regardless. Claudia has taught all of us to never give up.”
“It was devastating to us when we were told she would never walk or talk. To hear that as a parent, just a number of things run through your head – she will never be out in the backyard playing. She will never go to a prom. She will never walk down the aisle at her wedding. It was devastating to us. But each time we see her reach milestones, it’s a reminder to us that you can never give up. Things that seem impossible ARE possible,” adds Tom.
If you wish to support The Summit Center in Claudia’s name, please click here.