Jaylen's rehabilitation from severe brain injury

Shemaiah James is organizing this fundraiser.

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Hi there, we are fundraising to support our son Jaylen after he has had extensive damage to his brain following a seizure episode. The fundraiser will look to support Jaylen and his family for all his additional and future needs.

On the 12th of November 2021 our son Jaylen (16 months old) was admitted to Prince Charles hospital after his Mum (Gabrielle) found him having a seizure in his crib at 4 am in the morning. Covered in his own secretions he was picked up and she called out to his Dad (Shemaiah) who immediately called the ambulance. That night prior Jaylen was running around the house, playing and talking like normal: full of energy, giggles, and smiles. His parents, unfortunately, didn’t get to see him smile again for 3 long weeks.

Once the ambulance arrived it took a while to stop the seizure. On record, he was recorded to have been known to be seizing for at least 41 mins from when he was found to when the paramedics were able to stop the seizure. At the hospital, he underwent a multitude of different tests including a cat scan, a lumbar puncture, blood, etc. All came back clear except they suspected he had a virus that spiked his temperature and triggered the seizure. At this time he was suspected to make a full recovery and they moved Jaylen from the emergency and sent him to award.

Unfortunately, Jaylen had another seizure in the ward and it was decided to transfer him to Queensland Children's Hospital: pediatric intensive care unit. At the time of the third seizure, while waiting for the retrieval team, his parents were asked to record the seizures to show the neurology team at the next hospital. Over the next couple of weeks, Jaylen continued to have seizures while on heavy anti-seizure meds. He continued to show seizure behavior that confused the incredibly competent team that was on his case. Going back and forth whether which movements were seizures as well as trying to figure out what was going on. His details were sent off to Doctors in Sydney and there weren’t a lot of answers for Jaylen’s parents: Gaby and Shem or his extended family.

The only solace they had was that the MRI scan that he had while initially being admitted to the Children's Hospital was clear. Unfortunately, on the 16th of November Shem and Gaby were brought into a private room with multiple Drs and shown his results from his second MRI… a devastating conversation ensued. Jaylen is now shown to have extensive brain damage on the outer and deep areas of his brain. Areas that would affect his motor functions, speech, language, and thought process. How he would be affected exactly would not be known until he wakes up. They also had diagnosed Jaylen with a rare medical condition called AESD - Acute encephalopathy with biphasic seizures and late reduced diffusion

“AESD is characterized by a prolonged febrile seizure (usually >30 min) as the initial neurological dysfunction, followed by a cluster of secondary seizures and deterioration of consciousness on days 4 to 6”

There isn’t much information known about AESD. Many Drs in Jaylen’s care did not even hear of the condition before treating him and doing research during his treatment.

After two weeks of being in Intensive care, Jaylen began to stabilise and was weaned off of higher sedative doses of his medications while everyone waited to see what his new baseline was. The next few days Jaylen presented a lot of irritability, his awareness was minimal, and had a lot of changes to his physical abilities. Increased tone and stiffness, weakness, dystonia, and not a lot of intentional movement. His physical ability was like a newborn again. Unable to hold his head up, sit up, or walk.

After 3 weeks Jaylen began to gain more moments of awareness, he recognised his Mum and Dad and began to smile again. His awareness had been his quickest improvement, now after 3 months being able to track with his eyes, recognise extended family and friends, and begin to babble again. His biggest ongoing hardship will be his speech, ability to eat, and his mobility.

Jaylen now has a severe movement disorder with hyperkinesis and dystonia. Through his rehab appointments, he has made small improvements and continues to make improvements with the support of the rehab Physiotherapist, Occupational Therapist, Speech Pathologist, and the rest of the rehab team at the Queensland Children’s hospital.

Although Jaylen is aware that things are difficult for him right now and can sometimes get upset when he is trying to move in ways that his body is unable to right now… he is still always smiling at everyone. Full of giggles and laughter. Jaylen was very active and healthy prior to getting sick. He had been running, jumping, climbing, and talking as well as feeding himself. He very much loves playing basketball, with his golf clubs, trucks, playing with his dogs, and bird watching. Jaylen has always been a determined little boy, a quick learner, and fiercely independent. With everything that has happened, he continues to persevere always with a smile on his face.

Shemaiah and Gaby have just been able to bring Jaylen home and will visit the hospital for day appointments. Jaylen has come home on a feeding tube, medications, and will need ongoing therapies. His parents want to make this transition as smooth as possible and want to ensure they can best support Jaylen while also physically being there and being available. We hoped to make their situation-aware to all those that are close to both Gabrielle and Shemaiah. If you are able to offer any sort of support to Jaylen’s newfound situation it would greatly be appreciated. All money will go into an account specifically for Jaylen and his future needs. Whether this is any costs of equipment, and materials not funded by NDIS, extra therapies that would be beneficial to Jaylen, gas to appts, and other things that will support Jaylen’s rehab journey and quality of life.