He was diagnosed with Idiopathic Intracranial Hypertension/Pseudotoumor Cerebri. Essentially his body does not absorb spinal fluid as it should, and the excess fluid builds up in his brain causing severe headaches known to be worse than migraines, and causes seizures, stroke and death amongst other issues. The medicine Nikolai takes to help his body reabsorb the spinal fluid has affected his kidneys and he was diagnosed with Metabolic Acidosis. He has had to endure almost weekly blood panels, a multitude of tests and procedures and medicine to keep his kidneys from failing. And, after an MRI of his spine, it was discovered that Nik has a Syrinx, a cyst of spinal fluid inside his spinal cord, in almost the entirety of his lumbar spine.
Idiopathic Intracranial Hypertension is a rare disease, and it is even rarer for it to be found in a child as young as Nik. Because of this, the Dr.’s in Colorado don’t have as much experience with treating it, especially in younger children. Nikoli’s parents were able to get an appointment with a neurologist at Nationwide Children’s Hospital’s Intracranial Hypertension clinic in Columbus, Ohio. The Dr. there believes he can help Nik. He has an initial appointment the week of April 1st in which he will see neurology, ophthalmology and have several tests/procedures performed.
The travel and medical costs necessary to get Nik the help he needs are an added burden and his parents require financial help in getting their family to Ohio and covering whatever medical costs Nik’s insurance won’t pay for. We are asking for whatever help can be given so this sweet little boy can focuse on playing rather than being poked and prodded by doctors.
- nancy finch
- Sompong Payne
- Tonyo Tejeda
- Dawn Diment
- Shannon Payne
Organizer and beneficiary
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