Twelve-year-old Caeren Adams’ immune system is attacking her brain leaving her hospital-bound and prone to painful seizures and as her condition continues to deteriorate, her family is in need of urgent financial support to fund her care.
Throughout 2023, Caeren was in and out of hospital and was initially misdiagnosed with meningitis and panic attacks. Despite treatment being administered she continued to suffer ceaselessly from seizures. It was only a year later that a conclusive diagnosis of autoimmune encephalitis (AE) was finally reached.
AE is rare severe disease triggered when the body’s immune system mistakenly begins attacking the brain causing inflammation.
This results in psychiatric and neurological symptoms including seizures, memory loss, behavioural changes, movement disorders and changes in thinking. Thirteen out of every 100,000 people are diagnosed with this condition and management thereof is complex and difficult.
Medical researchers have indicated that early diagnosis is crucial but given it is difficult to detect and extremely rare, the road towards optimal management of her disease will be long and arduous for Caeren.
She has been forced into semi-permanent hospitalisation, which has disrupted her schooling and put an end to her carefree childhood.
Under the care of the medical team at Life St George’s Hospital in Gqeberha, Caeren is receiving treatment similar to cancer patients and is often confined to the hospital for three-month periods.
Her mother, Rehana Casoojee Latchmigadu, said Caeren’s arms are littered with blue marks from the hospital drips and her spirit, once vivacious and adventurous, has been dealt a heavy blow by the fear and isolation associated with her disease.
Casoojee Latchmigadu said: “I still can’t come to terms with what has happened to my child. In a day our whole lives turned upside down. All I can see is a disease that has upended perfect little girl’s hopes and dreams.
“I have had to watch my child lose her ability to talk and even walk. I have watched my child suffer through her disease and the side effects of her medication and, at one point, I watched my child almost die.
“Emotionally, I am constantly in fight or flight mode and financially it has taken a huge toll as costs for travelling to St George’s for treatment and the medication, continue to pile up to almost R100,000.
“I am starting to crack under all the stress.”
Casoojee Latchmigadu said the costly treatment does not eradicate the disease but is intended to suppress Caeren’s immune system to prevent it from attacking her brain.
Caeren needs to be confined to sterile spaces for fear of catching illnesses and germs that could aggravate the immune system and cause her to relapse into seizures.
Casoojee Latchmigadu said: “Caeren is bravery, courage, hope, love and faith personified. I look to her for strength because of how she is fighting against the odds. There are days when tears roll my down my cheeks and she says to me, ‘Don’t worry mum, Jesus is here and everything will be okay.’
“Even though Caeren has been given this terrible hand of cards, she is playing them with positivity and teaching me to focus on my blessings even during the hardest moments.
“Caeren has taught me to get back up after you’ve been knocked down.
“This has not been an easy journey and there is still a long road ahead but we have been each other’s strength.”
Should she get the all clear from her doctors, Caeren is determined to return to school next term. At the hospital, she told the GO!&Express: “I’m looking forward to having a normal life and doing what I used to do, like dancing and not worrying about germs and just being me.”
University of Pretoria’s paediatric neurologist at Steve Biko Academic Hospital, Prof Izelle Smuts said that AE remains underdiagnosed in non-specialist settings and that without early detection delayed diagnosis results in prolonged neurological dysfunction, drawn out rehabilitation and the risk of incomplete recovery.
While children like Caeren have impressive neuroplasticity, the recovery trajectory is longer when inflammation has persisted untreated.
Smuts said the challenge lies in the signs of AE not being detected by non-neurology specialists, as patients are often first seen in emergency rooms or psychiatric settings.
Smuts said: “We must improve interdisciplinary awareness and education. Clinical guidelines should highlight AE as a potential mimic of meningitis, epilepsy or primary psychiatric illness.
“Classic signs for clinicians are; new on-set seizures, behavioural changes and abnormal movements in a previously healthy child. While these signs may evolve over days, early suspicion can drastically alter outcomes.
“AE is treatable but potentially severe and awareness is vital. It arises when the immune system, due to a complex interaction of genetic predisposition and environmental triggers mistakenly attacks the brain tissue and in children, the developing brain and immune system may be more vulnerable to such dysregulation. Understanding these triggers remains an area of active research.”
Smuts said children they have worked with before at Steve Biko Hospital have made remarkable recoveries with the correct timeous treatment and that with ongoing rehabilitation and support Caeren can achieve a substantial recovery.
To assist Caeren towards recovery, family friend Tracy Kallaway has started a Back-A-Buddy and contributions through her will be used to meet the medical bills and travelling costs.
Kallaway said: “Caeren has a kind, caring and respectful spirit. She is highly determined, brave and courageous. The way she has managed to fight this illness is admirable, although it is heartbreaking to watch.
“Without financial support the family will continue to cripple under the pressure. They need the community to stand behind them.”
SA Medical Association and the Council for Medical Schemes in SA were approached for comment regarding financial strain of AE treatment however neither replied by time of print.
Casoojee Latchmigadu said Caeren loves dancing, art, reading, writing and animals.
She has the sweetest nature and loves her brother best of all. With help from the community, Caeren can hopefully spend many more years enjoying what she loves.
To support the family please visit: https://www.backabuddy.co.za/campaign/help-caeren.
