Jack's medical supplies, recovery & family bills

Hello, my name is Logan Jeffrey and I'm raising funds for my 1-year-old nephew Jack and his family. At 10 months old, Jack was diagnosed with a rare condition called comorbid left hemispheric cortical malformations including open-lip schizencephaly, polymicrogyria, and heterotopia, with intractable focal epilepsy, myoclonic seizures, and global developmental delay. Basically, this is where the brain cells do not migrate like they should in utero. This leaves an open space where the fully formed brain should be. This empty space will fill with cerebral spinal fluid instead. There are also too many folds in Jacks brain which typically indicates seizures are likely. He was prescribed anti-seizure medications and therapies. He currently is in speech, feeding, occupational, and physical therapy.

Jack will have these small jerky seizures all day long. Some days he can have 100 or more. Jack’s seizures continue to worsen and now some will knock him over, slamming into the ground. He wears a fitted helmet at all times, other than sleeping, to keep him safe. Unfortunately, with intractable epilepsy, medication will not work to reduce seizure activity. He was eventually referred to the Children’s Hospital Epilepsy Clinic and scheduled for a 24-hour EEG, MRI, and PET Scan in October 2023 (less than 2 weeks after Jack’s mom gave birth to her youngest son). Jack’s medical team consisted of Complex Care, Neurologist, multiple Epilepsy specialists, physical medicine physicians, Epileptologists, Neurosurgeons, Developmental Psychologists, and a case manager.

In December 2023, Jack’s team of doctors decided the best way to treat Jack’s epilepsy was to have what is called a left Hemispherotomy. The entire left side of Jack’s brain is basically sending "bad" signals constantly even through sleep. This will ultimately begin to transfer to the right side of his brain, progressing and worsening over time. During surgery, they will go in and disconnect all the connectors that send those bad signals. They will remove small parts of the left side of his brain but leave most of it there, so he has a better chance of NOT developing encephalitis. This surgery has been successful in slowing down or stopping seizures all together.

There are only 2 surgeons at Nationwide Children’s Hospital in Columbus that perform this surgery. It is performed about 10 times per year total. It will most likely take 10-12 hours to complete.

There are side effects from the surgery. He will lose peripheral vision in his right eye, and all vision on the right side of both eyes. His right side will be even weaker than it is now. However, with therapy, he can build his strength in his right side to use as a "helper hand". We are hopeful Jack will be able to walk eventually with assistance of braces, but he will also need a wheelchair. They say that because he is so young and his right brain is already learning to do things his left brain can’t do, that he will have a better chance of recovery.

After surgery, Jack is expected to be transferred to ICU and remain there for around 2 weeks. He will have a drain tube that will drain excess fluid from his brain while it is healing. Once his drain tube is removed, he will remain in the hospital overnight to make sure everything is going okay. They say he may have to go to an in-patient rehab center for up to 3 months.

Jack is one of 5 children. Jack’s mom is the primary at home caretaker and works as a nurse. She works on the weekends when possible. Jack’s dad works through the week and is often on the road for days at a time. Since someone will have to remain with Jack the entire time he is in the hospital, the family will need all the support they can get taking care of their other children. During Jack’s hospitalization and recovery, their lives are going to be challenged as they try to maintain a “normal” life for their family. In addition to Jack, they have a 10, 8, and 3 year old (girls) and 3 month old little boy.

The biggest challenges so far will be worrying about the monthly bills due to not being able to work, and costs for any childcare if dad is at work. Once Jack is recovering, we know he will need intensive therapy soon and often. We hope for a miracle and that the seizures stop, but Jack will still need multiple devices that will assist with his disabilities. We aren't sure on all the equipment he'll need or what items will be covered by insurance yet. As of right now, items that the family are planning on needing soon are:

A safe bed for Jack – Cubbybed.

A monitor system/seizure alert system – SaMi or something similar.

Communication device, wheelchair, braces.

Eventually a service dog once he's old enough.