Ocean is 1.5 years old. He was born at 34 weeks gestation in the Dominican Republic. In the beginning he struggled with his health as he was only 3 lbs at birth. In the following months he gained weight quickly and regained his health, however around 5-6 months we started to notice that he was not developing at an appropriate rate for his age. He could not hold up his head on his own, he could not pull himself up or sit and he did not respond visually when called. This is when the medical appointments started with Ocean, trying to figure out what was going one. Ocean and his family, together with Samana Smiles Foundation are asking for your help with his ongoing medical expenses.
At 8 months of age Ocean started having seizures and this is when the medical journey began. The doctors confirmed that Ocean was underdeveloped for his age, he had sensory difficulties and they were investigating the cause for seizures and underdevelopment. Around this time they discovered that Ocean had problems with cerebral corpus callosum. He also had abnormal electroencephalogram (EEG) with high amplitude, chaotic spike wave patterns. He was then diagnosed around 1 year of age with West Syndrome. https://rarediseases.org/rare-diseases/west-syndrome/
This syndrome is linked to infantile spasms which can continue through out his life.
Right now Ocean is 1.5 years old. He cannot sit on his own, he cannot crawl or walk. Ocean is in need of ongoing therapy as well as frequent medical visits. He is on medication to control the seizures. He is stable and not having regular seizures. Ocean's doctors have recommend Exome Proband Only genetic testing to help decide how to further treat Ocean's medical condition to give him the best outcome in the future. The cost of this test is 87,000 pesos (approximately $1550.00 usd). Ocean will also needs other test in the future including MRI, possible EEG as well as construction of an inclined floor to help with his movement and development of his fine motor skills.
In the Dominican Republic, the public insurance that Ocean has, does not cover any of the specialized neurological or genetic testing that he needs. Together the family (Ocean's Mom and Dad, Sofia and Junior) along with the help of Samana Smiles Foundation in United States and Las Terrenas, Dominican Republic are asking for help with his medical care. All funds donated will go through the Samana Smiles Foundation and be distributed to the family to pay for Ocean's medical care. We need your help now so that we can continue to provide the best medical care for Ocean. All of your donations will go directly to his ongoing medical care, therapy and the much need genetic test he needs to help decide the best attack for his continued medical care.
A photo showing Ocean in the first month of his life compared to a few months later.
Most recent photo of Ocean at 1.5 yrs old
For more information you can contact us through Go Fund Me, or Samana Smiles Foundation directly. http://samanasmiles.org/
Mike Bidwell - President (Samana Smiles Foundation) 1 (440) [phone redacted]