Hello everyone,

On behalf of our family, thank you in advance for taking the time to read Assem’s story. Any support is greatly appreciated!

In November 2024, the unimaginable happened that turned our lives upside down. Our dear Assem, a 36 year old young man with no prior health issues, is currently on month 10 of this extraordinarily difficult battle. A day after his birthday in November he complained of having the worst headache of his life so his wife, Natasha, took him to the ER. After a CT and MRI they discovered he had an inter cranial ruptured dermoid cyst (causing his headache). Known to rupture mid-life but something he’s been living with since he was born. After spending four days in the hospital, he underwent the planned procedure to remove it. Although the extraction was deemed ‘successful,’ shortly after the surgical closure in the ICU, he became fully dependent on the ventilator. This became evident when attempts to extubate him failed. When he was rushed for a post-operative MRI to determine what had happened, doctors discovered a basilar artery occlusion (BAO)—a rare stroke that accounts for only about 1% of all strokes.

Typically, ischemic strokes are treated with TPA drugs, but in Assem’s situation the hospital reported an even rarer occurrence: the occlusion had resolved itself by the time it was detected. According to written literature, only five such cases have been documented worldwide. Sadly, in the half-hour or so that the event lasted, his brain was deprived of oxygen, resulting in catastrophic damage to the posterior fossa, cerebellum, midbrain, and left hemisphere. These are parts of us that control our ability to breathe independently, for our hearts to beat, parts of us that control our level of consciousness, our ability to open our eyes, our balance, coordination and everything that makes us live a functional life.

At first, the doctors had discussed pulling the plug 3 times, stating he would no way come out of this, that if he ever did, he would be in a vegetative state, potentially unconscious for the rest of his life and likely supported by machines. Natasha has sat, day in day out, by his side for the last 10 months. Medical opinions are exactly that, opinions, and ultimately the way forward was never in the doctors hands. Along the way, they were wrong time and time again. We have achieved many milestones in the last few months. After 4 failed attempts, Assem was successfully weaned off of the ventilator in April and soon after, he moved to a rehabilitation facility with an aggressive inpatient plan.

Assem now is 100% awake and aware. He fully understands what we’re saying and on good days, communicates back with hand gestures and gentle movements in his head. Having said that, his eyes are still closed. His primary neurosurgeon said everything that has happened to Assem to date has been extremely rare and that now he has mid brain syndrome otherwise known as Benedikts syndrome - Causing apraxia of the eye lids (AOL) which is why his eyes won’t open spontaneously.

A message from Natasha:

Although Assem’s eyes are compromised, he’s getting physically and cognitively stronger by the day. I still open his eye lids to communicate better, and with that visual stimulation, he is mostly responsive on command. I show him pictures and videos of our daughter, and he gives me big smiles. If I lay my upper body in his chest, he’ll cup my back and hug me, if I kiss his hands, he’ll slowly lift my hands to his face and kiss mine back. He moves his legs, his arms, his head - he follows my voice around the room, latches onto the sides of the hospital bed and pulls his whole body up, or at least he use to before his most recent set back. In Physiotherapy, we had gone from sitting in the chair, to assisted sitting on the side of the bed to walking in the gym. Sure, all with a mass amount of assistance but he’s come such a long way. He was doing this with the support of 2-4 physiotherapists at a time, even so, he use to initiate so much and is clearly determined to try. We are desperate to give him a fighting chance. He deserves to get the help he needs but we need to support him in more ways than one. Some people will still look at his current clinical state and be pessimistic with his recovery, but we cannot belittle how far he’s come. If the roles were reversed, I’d surely want someone to fight hard for me and with me, so I’m doing just that!

He spent 6 months in an acute hospital and now has been in a rehabilitation facility for a couple of months. In these few months he has made incredible progress. Up until a very unfortunate set back. A few weeks ago, Assem’s right leg stiffened incredibly, it was evident he was in tremendous pain. We would ask him to give us a thumbs up if he was in pain, in areas we touched around his thigh and knee, and he would give us a sharp thumbs up. After countless appointments with neurosurgeons, neurologists, multiple orthopaedic surgeons, they finally sent him to a vascular surgeon. Assem has a hematoma in his right thigh and an edema, plus, grade 2 muscle strain. It’s been a huge set back. The last few weeks, his entire PT course has changed into gentle stretches, weight bearing on tilt tables etc.

In order to support him, not only do we need to give him the right medication and change in therapy, but we need to find the right leg brace to get his knee bending motion back. A specialist came in to evaluate him and they’ve suggested a knee Ankle Foot Orthosis (KAFO), a carbon custom fit to his leg. We tried to push this through to Assem’s insurance and of course they declined. This will cost almost £6,000.

More importantly, whilst Assem and Natasha have had some support from his employer, the insurance provider has been difficult along the way and have cut him off for rehabilitation since 8th June. Since then, Natasha has been paying over £12,000 per month to keep him in inpatient rehabilitation. His insurance policy will now only cover him for emergencies if he ends up back in hospital and covers most of his outpatient appointments if any. Having said that, this will cease to exist soon as his employer has offered to support, one year from event but then we’re on our own. Some insurance providers do offer health coverage for people with pre-existing medical conditions but the cap is about £30,000/ year and rehabilitation, long term nursing etc. is not covered. Therefore, such insurances won’t help us.

We know it is a long road, but we have faith, faith in him that he will continue to progress as he has, especially if we continue helping him. We reach out to our larger networks and kindly ask you all to support, any small donation is contributing to his upcoming treatment plan. None of this money is for his wife, or daughter, this is purely for Assem’s medical treatments moving forward.

What we are looking to cover with the money we collect for Assem:

In-patient rehabilitation (at least another 12 months).

Hyperbaric Oxygen Therapy (multi place chamber /3 times per week).

Red light/ infrared light therapy machine.

Another 4 rounds of Vagus Nerve Stimulation(we have purchased 2 devices from abroad to date).

Other forms of Neuromodulation (such as TPS Neurolith).

Tens machine.

Acupuncture.

Botox for spasticity.

Occupational therapy tools.

If you’ve made it this far, thank you for reading and God bless you all.

The Demetrious