Help make hope for Oliver, a reality.

This beautiful little soul, is Oliver.  
Oliver was born with a “giant”. very rare, brain tumor which, while not cancerous, it is far from benign, in how it impacts Olivers life. Since birth, Oliver has suffered 4 - 12 seizures per hour, 24 hours a day (80 to more than 200 seizures per day) despite being on multiple anti- seizure medicationsOllie is fed via J-tube due to the number of seizures and the high risk of aspiration. Something as small as the common cold can be life threatening for Oliver, as it causes increased seizures which results in increased medications and sedation alongside airway blockage.  Oliver’s brain tumor blocks the usual messages that a healthy brain sends to the body in times of stress. Aspiration often results in pneumonia causing respiratory distress and organ failure levels of oxygen saturation.  This is only one example of emergency throughout Olivers life,  he has endured one emergency after another.  Oliver has spent multiple holidays hospitalized,  and suffered all of it with a sweet smile and calm disposition, that has won so many of our hearts’

Shortly after his birth, we were told that due to the size, location, and  attachment  of the tumor there were no surgical options. We were told to take him home and love him.   After reading about the longterm prognosis for much smaller tumours then Oliver has ,  we realized that Oliver checked every box for “potential degeneration”. In fact,  Olivers tumour, based on growth at the same rate as the brain, would be 3 times larger then the classification of “giant”. We have no playbook, and have realized Oliver's condition is so rare, his many specialists are unable to provide us with more clarity. Planning for the worst, has become a necessity, because the alternative would be irreversible damage, surprising us all, once its too late.

As Oliver has grown, he has shown remarkable spirit and resilience.  He is cheerful and determined and has mastered crawling and pulling himself up and walking around furniture.  However this is riddled with dangers and injury, because of his relentless seizures.  Oliver loves music, and has mastered many things like animal sounds and partial a-b-cs,  and numbers, but he loses this as quickly as he learns it. Life for Oliver is one step forwards, two steps back, due to The brain damaging seizures, and high dose of anti epileptics, which have had a devastating effect in his development.  As mother and family, we have been fully dedicated to supporting Oliver to provide the best quality of life possible for him and his older sister.

As Oliver gets older and bigger he requires many items to support ongoing safety and development.  Some examples of major expenses the family is facing are:  a safety bed to prevent injury and falls, seating support and a wheelchair  so he can continue to get out and explore, a push chair for times when he is simply having too many seizures for a wheelchair, a chair lift for in the home as he is getting too heavy to carry up and down stairs, and an equipment adapted van.   All of those expenses, save a portion of the wheelchair frame, fall on the family to pay for, and amount to a potentially six digit figure.

After Oliver’s case was presented at a medical conference last year, we were finally given a glimmer of hope, by a neurosurgeon from Sick Kids Toronto who believes it is possible  for Oliver to achieve seizure reduction and potentially even seizure freedom, regardless of the enormous size and attachment of his tumor.   Oliver is now a candidate to start the 3 part surgery  (3 operations each 6 months apart).  This has to be done in Toronto and will require 3 trips back and forth.  

With the COVID 19  exposure risk, flying is not an option.  Not only for the risk of catching covid, but the risk of waiting until its too late, to start the procedures.    If, upon arrival to Toronto, Oliver tests positive for COVID 19, the surgery will be cancelled.

Waiting out the pandemic is not an option for Oliver.  Increased progression normally ‪‪starts at 4‬‬ and Oliver turned 4 last week. Oliver is anything but normal, and is already farther along the scale of symptoms than most others within this diagnosis are at his age.  It is unknown what will happen but further degeneration could potentially be irreversible. Oliver checks all the boxes for the worst case scenario.  The hope is that by reducing seizures, we can reduce medication as well, and this alone, increases Olivers chance at any kind of decent quality of life, or development, and decreases risks such as sudden death, which is largely increased by the amount of meds and seizures a person has.

The first procedure is set for this upcoming October, and we have made the hard choice, to drive back and forth for his surgeries.  This will result in significant expenses as many of the usual support systems are not available or set up for the unique situation.  With the COVID risk we are unable to fly, use public transport, eat safely in restaurants, use most public washrooms, and have limited accommodation options.  We have our work cut out for us, to get there safely, and COVID free, so we don’t miss out on the only surgical option available for Oliver.

Please help us give Oliver a chance to thrive.  Anything to help relieve some of the financial burden, would be greatly appreciated.  

Thank you

Oliver and Family


I will send updates with how these funds are 
used, and photos of Oliver, living life and doing
things he couldn't do without the surgeries and equipment.