Inside story of Semmi’s journey, life, struggles plea.
Semmi Veles Kafonek | Born: April 15, 2019
SEMMI’S BEGINNING
Born April 15th, 2019, naturally, after 29 weeks of pregnancy, two weeks on the hospital bed, after amniotic fluid loss. Very much alive and breathing well on his own, feisty and rather stubborn. They called him the “Rock Star” at NICU; he was not a cry baby but opinionated..:)
After six weeks he was able to come home. Except for colic pain after meals and a few other baby troubles, he was developing well. In about seven months of age, the scissoring leg tendency became a concern and he was diagnosed with cerebral palsy-spastic diplegia.
Approximately at two years of age he could stand on his own. At three years he would walk a short straight line, often falling with very little stability, now he walks “pretty good”; but any change of direction or outside element can make him wobble or fall… he always stands back up though!
SEMMI’S JOURNEY
Semmi has started 3x/week therapy sustaining from motivated movement, activities, etc. We have specialists around the Panama City, Florida area and have additionally seen doctors in Gainesville, Florida. We have received evaluation for the selective rhizotomy surgery from Pensacola Child Neurology Center, and he’s currently receiving botox applications in Miramar Beach from Dr. Renfroe. This treatment is to relax his muscles for better development of his joints and other areas of his body.
We’ve also visited a specialist in Prague Czech Republic for a second opinion and help with diagnoses. We went to both Vojta’s and Bobath method specialists for a therapy to get advice and help with the exercise.
3x Week Therapy
Started 3x/week therapy sustaining from motivated movement, activities, etc.Panama City, FL Specialists
Visited multiple specialists around the Panama City, FL areaGainesville, FL Specialists
Visited multiple specialists around the Gainsville, FL areaRhizotomy Survey Evaluation
Got evaluation for the selective rhizotomy surgery from Pensacola Child Neurology CenterBotox Injections
Receiving botox applications in Miramar Beach from Dr. Renfroe to relax his muscles for better development of his joints and such.Prague Czech Rep. Specialists
Visited a specialist in Prague Czech Republic for a 2nd opinion and help with diagnoses. Went to both Vojta’s and Bobath method specialists for a therapy to get advice and help with the exercise.
SEMMI’S LIFE AND STRUGGLES
As it’s not easy to include him in regular preschool or kindergarten for his walking and self handling handicap, he is making his move into a reading world. He likes Maugli stories, among others. He does math counting, adding, subtracting and loves to sell ‘stuff’ while behind register.
After Semmi’s arrival to this world we decided to move to a cabin in the northern Florida woods, rebuilding the place ourselves making a modest, cozy home for him. He loves to spend a lot of time in the water in the nearby river and is fond of all animals, tracking the tracs and creating imaginative stories about the forest creatures and magical beings. He recently discovered the beauty of snorkeling. As his grandma plays the fiddle, and his dad plays guitar, piano etc., he’s found a love for music. He enjoys Vanessa Mae on violin, Eric Clapton’s blues, or his favorite AcDc. He is into science and his Christmas present wish at the age of two was a microscope. His only good night stories are about deep sea creatures or other animals and carnivorous plants.
We are trying to provide the best care and therapy for him, opening the world of all possibilities for his road ahead. He spends a lot of time with his mom at work, where she cleans houses. His dad is a remodeling contractor. They are battling the time, customer’s desires and the money to provide and keep developing/fixing home. As we ruled out the surgery based on research and data, we still believe there are other ways to secure his future independence and full potential.
SEMMI’S PLEA
We will be traveling to Piestany in Slovakia this winter for two weeks for intensive therapy and hope for improvement; learning new strategies to achieve the goal. We know the main challenges are yet to come as Semmi will be entering new stages of his life. We will be developing new ways to cope with his limitations obstacles. As positive as we are as a family, there’s always a bit of uncertainty if we did the best we could.
The care and travel for Semmi is always about money and our possibilities are limited. The requirement and frequency of therapies are always greater than we can offer him. We have come to the point of questioning” Is there another way to provide?”
This is a plea for Semmi. For his better future and happiness. For his fulfilled dreams and achieving the full potential of one’s existence.
We love that once a little speck of life, now the stormy genuine unstoppable surge of energy and friendliness.
PS: When asked what his best talent is, Semmi says “running, you know I can run really fast!”
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Your donations to help Semmi fulfill his best life, goals and dreams would mean the world to not only Semmi
but his entire family.
