Medical Expenses for Odin Riley

We are Shaun and Amanda Riley owners of Foggy Nantucket & we are fundraising for our son Odin to help pay for Medical Expenses.

Odin has been diagnosed with Neurofibromatosis type 1, Acute Disseminated Encephalomyelitis, Epilepsy, ADHD & Autism.

A brief explanation –

Neurofibromatosis type 1 or NF1 – A condition that causes tumors to form in the brain, spinal cord and nerves. Odin has these tumors deep in his brain that we cannot operate on without causing more damage.

Acute Disseminated Encephalomyelitis – This is a rare Neurological disorder characterized by brief but widespread attacks of inflammation (swelling) in the brain and spinal cord that damages Myelin. This attack causes inflammation and injury to the nerve sheath (myelin) and ultimately to the nerve fibers that it surrounds. This process can result in multiple areas of scarring (sclerosis). If this happens multiple times, it moves to the more commonly known name of Multiple Sclerosis or MS.

Epilepsy – Happens as a result of abnormal electrical brain activity, also know as a seizure. During and after a seizure you can have

Confusion

Staring Spells

Uncontrollable jerking movements

Stiffness & sore muscles, injury from falling

Psychological symptoms such as fear, anxiety or déjà vu

Loss of consciousness or awareness

Loss of airway, death

ADHD – ADHD is a chronic condition including attention difficulty, hyperactivity, and impulsiveness. Even though NF1 is considered rare, up to 50% of children diagnosed with NF1 also are diagnosed with ADHD & experience difficulty with behavioral problems involving attention deficits, hyperactivity & impulsivity.

Autism – Is a broad range of conditions characterized by challenges with social skills, repetitive behaviors & speech. Several factors may influence the development of Autism and it is often accompanied by sensory sensitivities and medical issues such as GI disorders, Seizures or sleep disorders as well as mental health challenges such as anxiety, depression and attention issues.

What all this means for Odin and our family –

Odin suffered a major seizure on Oct 6 2022. Im sure many of you noticed we were not open at Foggy as much as we wanted, but as you can imagine going from a seemingly healthy boy to one in ICU shakes things up a little. Odin was in ICU at Boston Children’s Hospital for two weeks. Its been a tough winter back and forth to Boston for appointments and a lot for him to take on. Odin for the most part has been a trooper, but he is very aware of his situation and worries about it often. As part of his neurological concerns, Odin bolts, elopes or wanders. All three things mean the same thing – He runs away from us at the store, escapes our house when someone is not in the same room & he is a run hazard at school. Odin has no impulse control. He gets caught up in the moment & does not recognize danger. He takes anti-convulsant medication daily to attempt to control his seizures & we’ve been concerned that he is having seizures at night while sleeping he also has headaches often from the NF tumors.

Please donate if you can, no amount is too small & would make a HUGE difference to one little boy!