This is my daughter, Kenza. She is 21 months old and has an undiagnosed genetic disorder. We are trying to raise money to help get her a diagnosis and stay afloat with bills after losing insurance.
Kenza's story: She was born November 2013. She was 8lbs 7oz. I was in labor/delivery 26 hours which resulted in severe meconium aspiration. In addition to that, her clavicle was fractured, had extreme swelling to her head and face, and severe blistering to her hands and feet. She was released from the NICU 9 days later.
Around 5 to 6 months of age I noticed my daughters spine being curved and her not reaching any milestones. Fast forward to now, my baby is wheelchair bound. Still does not roll, crawl, sit or talk. She eats only pureed foods. She has very bad scoliosis as well. Her weight fluctuates due to poor eating and a feeding tube is in her future. She has been tested for SMA, Myotonic dystrophy, Prader-willi syndrome, metabolic disorders and also had a muscle biopsy done. And we still know nothing. Her brain is not expanding as a normal child's should and MRI'S suggest a neuro degenerative disorder.
We just lost our Medicaid last week and are in the process of getting private insurance, which is very expensive. We will now be paying out of pocket for office visits to pediatrician, neurologist, orthopedist, geneticist, ophthalmologist, gastroenterologist as well as physical and occupational therapy, feeding and speech therapy. We will also now be paying for equipment as well and we have a back brace we will be needing soon.
Anything and everything helps at this very moment. I'm trying to remain hopeful through this scary but amazing journey we call life.
Thank you for reading our story.
The Hocini family.