Community rallies to raise $35K for toddler with rare medical condition

In just 24 hours a South East Queensland community has rallied to raise more than $35K for 16-month-old Jaylen after he was diagnosed with a rare medical condition after suffering a seizure just before Christmas.

Friends, family and complete strangers have rallied to help raise more than $35,000, in just 24 hours, for 16-month old Jaylen, who has been diagnosed with a rare medical condition just before Christmas.

Jaylen James, is the son of Shemaiah and Gabrielle James, from Bridgeman Downs.

Mr James is an Australian triple jumper who has his sights set on one day representing his country at an Olympic Games.

The young family received the shock diagnosis about their previously happy and healthy son just before Christmas.

The medical condition was uncovered after Jaylen was found having a seizure in his cot on November 12.

Shemaiah and Gabrielle with their toddler Jaylen James who has been diagnosed with a rare medical condition. Photo: Go Fund Me.

“The night prior Jaylen had been running around the house, playing and talking like normal, full of energy, giggles and smiles,” Mr James shared in an online fundraising page.

“We didn’t get to see him smile again for three longs weeks.”

After Jaylen was found seizing in his cot and ambulance was called and the toddler was rushed to hospital.

Doctors did a range of tests, scans and a lumbar puncture.

“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 a ward.”

Unfortunately Jaylen had another seizure and he was transferred to Queensland Children’s Hospital.

Jaylen was a happy almost 2-year-old before he suffered his first seizure. Photo: Go Fund Me.

“Over the next couple of weeks, Jaylen continued to have seizures while on heavy anti-seizure meds,” Mr James said.

“He continued to show seizure behaviour 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.”

A second MRI found the seizures had caused extensive brain damage meaning Jaylen’s ability to walk, talk and think would be impacted.

Jaylen, 16, has spent weeks in hospital after suffering multiple seizures. Photo: Go Fund Me.

It lead to the diagnoses of a rare medical condition called AESD — Acute encephalopathy with biphasic seizures and late reduced diffusion.

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

After two weeks in intensive care Jaylen started to stabilise – when he woke up he had the physical ability of a newborn, unable to hold his head up, sit or walk.

Another three weeks went by and Jaylen began to gain more awareness and smiled again.

“Now after three 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,” Mr James said.

Gabrielle with her toddler son Jaylen who will now requires lots of medical care after being diagnosed with a rare seizure condition. Photo: Go Fund Me.

“Jaylen now has a severe movement disorder with hyperkinesias 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.”

The James’ family have finally been able to bring Jaylen home. He is on a feeding tube, many medications and needs ongoing therapies.

They started an online fundraising page to help raise money for the medical costs. More than $35,000 has been raised in just 24 hours.