what is transverse myelitis

Friday evening 27 November 2015: Samuel was running around with all his mates at his school disco. Before his classmates would be arriving for school on Monday 30 November 2015, Samuel was in an induced coma, fully paralysed and on a life support ventilator breathing for him.

His entire spinal cord and parts of his brain stem were being attacked by his own immune system brought on by a rare condition known as Transverse Myelitis. The extent of the effect on Samuel has been extreme.

Life had been fully upended for Samuel and for his immediate family with so many more family and friends traumatised by how this fit, healthy and loving young boy has seemingly overnight been robbed of so much capacity.

Essentially - while his intellectual capacity, understanding and sharp wit have thankfully not been affected - he cannot walk, move, use his arms/hands/fingers, speak, swallow or breathe for himself.

 

If the ventilator tubing separates from his tracheostomy tube, he is unable to reconnect it to maintain his ventilation.

He has full understanding of his situation and of what is happening around him.

He is quadraparesic (quadraplegic with sensation) with only functional use of his right foot/toes.

 

His torso and arms are paralysed including his diaphragm - rendering him reliant on a ventilator for survival.

 

The paralysis from his brain stem renders him unable to swallow causing oral secretions to build up in his mouth requiring constant suctioning.

 

Use of his vocal cords appears to be intact but because his epiglottis is also paralysed (the epiglottis covers the wind pipe during the act of swallowing), the inflatable cuff on his tracheostomy tube must remain inflated.

 

While this protects his respiratory system from the build up of oral secretions that he cannot swallow, it also renders his vocal cords as useless because there can be no airflow through them because of the inflated cuff.

Samuel will not be the only home ventilated child in Queensland. Other home ventilated children and their families also need support and Samuel is keen for you to also be mindful of their needs.

 

And while Samuel cannot access any 3rd party personal insurance for his condition as it was not as a result of an “incident” or “accident”, his desire for others to not be disadvantaged typifies his nature.

SAMUEL'S JOURNEY

Samuel will require two trained people close by to him 24/7. These people will need to be trained in use of the ventilator and trained in the emergency treatment or replacement of the tracheostomy tube (trache trained). Those close to him will be trained. But they need to sleep - so there will be trained strangers in the home at night and at other times during the day.

To get Samuel home, over $350 000 has been estimated as the amount of funding we are needing. This will go to covering costs for home modifications, specialized medical and therapy equipment, wheel chairs and a modified motor vehicle.

Funding for staff to be monitoring Samuel during the day and at night when we are asleep is also needing to be sourced - and this will be for the long term.

Until all basic equipment, home modifications and staffing are in place, we cannot bring him home.

There will also be ongoing equipment costs after Samuel is home which will serve to provide some quality of life.

getting samuel home
samuel before transverse myelitis
what happened to samuel thorne

STRUCK DOWN

THE FINANCIAL HORIZON

NOT JUST SAMUEL

CARERS

As Samuel's parents, we will continue to do our best for Samuel.

But we are also the parents of his biggest fan, his older sister, Amelia. And it has been very difficult to give her the time she deserves especially as she began university this year.

Amelia - you are awesome! Thanks for what you do to help Samuel work through this. There's nothing like Big Sister Love!

amelia and samuel