Brandon is a little fighter and has been since day one. Shortly after Brandon was born there were medical concerns that were to be forwarded to specialists for proper diagnosis and care, then COVID-19 happened. COVID-19 delayed any and all medical care and treatment. Over the next few months, the few appointments that Kurt and Dara were able to make and attend, seemed to feel like they were heading in the right direction.
Then on August 20th, Brandon was rushed by ambulance to the hospital, as he was having seizures. They had a difficult time stopping the seizures and he went through hours of seizing until they found a medication that worked. Brandon was then diagnosed with epilepsy. Once they had his medication figured out, he was able to return home but not before costly monitoring equipment was purchased to help keep Brandon safe.
Life seemed to settle into a normal routine for their little family and on Dec 16th, 2020 they happily celebrated Brandon’s first birthday. The family was enjoying the season and anticipating a healthy and happy holiday season when the unthinkable happened. On December 20th Brandon again faced seizures that they could not get to stop, accompanied by a high fever.
Brandon was again rushed by ambulance and admitted to the ICU for what has turned into weeks of emergency lifesaving care consisting of intubation, coma induction, bilateral ear tube surgery, multiple setbacks, IVAD surgery and finally a diagnosis of an extremely rare genetic mutation that causes hemiplegic migraines (these present as a stroke and can last for weeks to months) and that triggers seizures which can last for hours. These seizures require Brandon to be put on a ventilator and placed in an induced coma to protect him until they can get the seizures under control.
The doctors have told his parents that he is the only child/person in the world with this specific genetic mutation. Because Brandon is the first to have this, there are no treatment plans that have been proven to work so it is trial and error with medications. There is also no way to tell what other medical problems he will face going forward. Brandon’s parents have agreed to allowed for his condition and journey to be medically documented to help any others who may be diagnosed in the future.
Dara and Kurt are no strangers to medical challenges. Dara has a mobility condition that she has had to navigate and adjust to. Motherhood has enforced her commitment to do everything she can to make a positive difference in the world and raise Brandon to be a child that will be resilient in the face of adversity. Kurt was diagnosed in late 2018 with MS. Needless to say, it has been a difficult couple of years for this little family. Regardless of Kurt and Dara’s health concerns, Brandon’s care and comfort are their main priority.
Kurt and Dara have been at Brandon’s bedside and even though Kurt is working and Dara is on maternity leave they are now facing an immediate financial concern.
Since Brandon’s condition has never been seen before by doctors they are unsure of what his medical journey and care will look like in the long term. Along with day-to-day expenses, monitoring equipment, daily living aids, medications, trying to finance a new bungalow style home, and that new home will have to be retrofitted for Brandon’s care in the short term and long term. All of these costs are astronomical to a young family who are just getting by.
You can imagine what a scary and overwhelming time this is for this young family. They are very grateful for the care they have been receiving at Alberta Childrens Hospital in Calgary.
They should be celebrating milestones and not worrying about all of these financial burdens. Please help us support Dara and Kurt so they can focus on Brandon’s health and not be worried about the financial burdens.
Please read, share and donate if you have the means too.
Posted by Brandon’s Nana Fraser and Aunties - He’s such a little fighter so we have to keep up the fight for him!!!
Your support and prayers are greatly appreciated.
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- Dominik Susmel
Organizer and beneficiary
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