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We can see a glimmer in his eye and know things are about to change. #SSPE

Ryan had measles when he was 9 months old (before his vaccine was due) and was admitted to hospital and recovered and lived a normal happy life. Until the age of 7 years old Ryan was a normal and happy little boy that did well in school and enjoyed playing soccer, building blocks, puzzles and loved playing with his little sister. In November 2015 we noticed a big and sudden regression in school and in Ryan’s behavior, he battled with Normal day to day activities, and started a strange “twitching” movement.

We went all routes to try and see what we could do to assist him, Psychologist, Occupational Therapy, Pediatrician, And a doctor that specializes in Neurology.

He attended grade R in Big School for about two weeks. And by the time we managed to get an appointment in January 2016 for a EEG and MRI , Ryan’s regression suddenly worsened and he would fall over while walking. Ryan was admitted to hospital in January 2016 and was diagnosed with idiopathic intracranial hypertension and Epilepsy. On the 12th of April 2016 After 4 lumbar punctures and various test searching for the cause, Ryan was diagnosed with a very rare condition named #Subacutesclerosingpanencephalitis (#SSPE) Ryan was getting very frequent seizures and also drop seizures but could still walk and speak until Around the 22nd of April 2016, when Ryan became extremely sleepy.

In May 2016 Drs informed us that Ryan went into #comatose state. (This was not a induced coma) Ryan also got a Lumbar peritoneal shunt to assist with the raised intracranial pressure. Ryan became fully disabled and could no longer walk or speak or eat on his own, and is now fed with a Mic-key. Ryan started improving again In June 2016 and was more awake and tolerated a standing frame. Ryan was finally allowed to start coming home around September 2016 for a weekend at a time, but had to return every second week for his SSPE treatment. Ryan received #Inteferon and #Ribaviran through an #Ommaya Reservoir directly into the brain and this is a very severe treatment that took a huge knock to Ryan’s body.

Although Ryan cannot speak we could see that he still tries to communicate by nodding his head and blinking, so we took him to get his eyes tested and Ryan has #CorticalVisualImpairment. We took Ryan for #AAC communication testing with Inclusive Solutions, and this has shown that Ryan still listens and understands and tries very hard to follow instructions. Ryan still battles with seizures and spasticity. His feet have been casted a few times and he uses hand and foot splints on a daily basis. Ryan also battles with recurring chest infections, reflux and aspiration and gets sick very easily due to his low immune system. Ryan is fully dependent on his care takers to bath and feed and change his body position. Ryan is fully disabled and has little to no head control and we use a wheel chair to move him around.

Saying all of this, We have however been seeing “small” improvements in Ryan. (Which is huge to us) He is now smiling and started making sounds and moves his hands and stretches himself. Ryan is currently out of hospital for longer periods at a time and we take him to Physiotherapy, Hydrotherapy, Speech(swallow) therapy, Occupational Therapy and Chiro. We can see a glimmer in his eye and know things are about to change. This has been a very heartbreaking journey but we remain positive and we are grateful for each day we have with him. With Love The Marks Family

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