Meet Soraya: 2020 Family Advocacy Week Champion
Soraya is participating in Speak Now for Kids Family Advocacy Week from August 10-14, 2020. Through this special event, Soraya and her family will share information about her health journey, Cincinnati Children’s Hospital Medical Center’s role in providing Soraya with necessary health care services, and why the public and our elected officials must invest in the future of kids like Soraya.
At 5 months old, Soraya was losing weight and struggling to eat. After a swallow study determined she was aspirating, her parents quickly understood they had a long journey ahead.
“We are two physicians with a child that does not have a diagnosis,” says Tasha, Soraya’s mother. “How could we ever help her if we do not know the cause? The emotional impacts on our family are infinite.”
Following a g-tube surgery at 6 months of age, Soraya and her parents started seeing multiple therapists and physicians. Currently there is no unifying diagnosis for her complex medical history that includes g-tube dependency, hypotonia, intellectual disability, muscle weakness, hypoglycemia, sensory processing disorder, scoliosis and several other syndromes.
“Realizing that our child would be medically complex was devastating. It felt like death and there was and will be a grieving process that continues for the life we had imagined for our child and comparing that to the life that we are living.”
Soraya has undergone weekly physical, occupational, feeding and speech therapy since she was 6 months old. After several years of expansive care, the family qualified for Ohio Medicaid.
“It has taken years for us to qualify for Medicaid, and it was Soraya's declining health over the past two years that had us qualify,” says Tasha.
She has needed medical devices such as braces on her feet, a medical stander prior to her walking, medical seat for feeding and a modified power wheelchair.
“We have had multiple challenges in getting services, medical equipment and medical labs covered,” says Tasha. “We have had to do multiple insurance appeals to get our wheelchair covered. We had similar struggles to cover the $10,000 medical bed.”
Currently, Soraya is declining physically and, to maintain her health, she is followed by over 15 subspecialists and continues multiple therapy appointments. Nevertheless, she likes playing with dolls, catching and releasing ants, snuggling with family
“I believe that my child would not be alive without Cincinnati Children's Hospital. She requires a multi-disciplinary team that only a children's hospital can offer.”