Main fundraiser photo

Critical Brain Surgery Needed for Ashley

Hello Everyone, 

My name is Nikola Matejic, and I started this GoFundMe page to help the love of my life, Ashley Fowler. We are asking for your support to help raise funds towards critical brain surgery needed for Ashley's quality of life.


Ashley was diagnosed with a rare symptomatic pineal cyst/cystic tumour in the centre of her brain after a MRI scan in early 2018.


A pineal cyst is a benign, fluid-filled deposit located in the pineal gland region of the brain. Although most pineal cysts are small and asymptomatic, in rare cases, larger pineal cysts (usually above 7mm) can cause a variety of symptoms such as: headaches, visual disturbances, memory loss, cognitive decline, muscle fasciculation, nausea, weakness, fatigue, light sensitivity, tinnitus, circadian rhythm dysfunction, hydrocephalus (increased pressure on the brain due to build-up excess fluid), and even seizures in extreme cases.


The Development of Ashley’s Symptoms


In December 2015 is when Ashley’s life started to fall apart. She started experiencing extreme headaches, blurred vision and body pain. These symptoms prevented her from driving and eventually prevented her from being able to work. After many visits with different doctors to find out what was wrong with no answers or relief, in early 2018 our family doctor finally approved a MRI scan. Upon the MRI scan they found a pineal cyst which measured 12mm in the centre of her brain. 


It shocked us to hear the news. We were confused and overwhelmed. After more doctor visits and an appointment with a neurologist, we were bewildered to learned that in Canada nothing can be done except to monitor the cyst as Ashley’s symptoms continue to worsen and debilitate her life. Due to symptomatic pineal cysts being rare, surgery is only performed by a handful of world renown neurosurgeons. Despite our advanced medical system, no one in Canada does the surgery. The cost to have out-of-country surgery is anywhere between $100,000-$150,000 but our Canadian medical system does not cover the costs. 


In the past year Ashley’s symptoms have grown worse. She experiences headaches that are more severe with sharp stabbing pains, vision disturbances that make it so she can no longer see properly, dizziness to the point where she has to stay seated for a long periods of time, weakness all over her body, extreme fatigue, memory loss, nausea, trouble processing things, and sensitivity to light. Ashley rarely leaves the house and her quality of life is deteriorating. It is devastating to see her suffer so much every day.


I would like for you to hear a little from Ashley herself…


“It’s hard to explain to someone who has no idea of the daily struggles you face. Feeling pain, feeling unwell, feeling awful inside. It is a struggle to make it through the day. Sometimes it feels like I’m a prisoner and there’s no escape. All I ever wish for is my happy/normal life back that I once had. It’s very difficult to watch the world go by and just be trapped in your own body with no help or relief.

Although my days are extremely difficult and painful, I try to put a brave face on and fight. I am not going to give up, for my 5 year old step-daughter and for Nikola who both love me more than I could ever ask for. They support me as I fight through this battle day in and day out. I was given this life, and I want to be able to live it to the fullest.”



This Is Where We Need Your Help


Ashley had a recent MRI done in February 2019 and the cyst has grown to 14mm. The symptoms that Ashley suffers from are worsening and debilitating her quality of life. We are asking for your kindness and support to help us raise the funds to have the pineal cyst in Ashley’s brain removed through surgery.





Ashley and I have found Dr. Dong Kim, M.D. a neurosurgery specialist in Houston, TX in the US. He is the Director of the Mischer Neuroscience Institute (MNI) and leads the clinical effort for the Memorial Hermann Healthcare System as well as The University of Texas Health Science Center in Houston. He has successfully performed surgery on patients suffering from a symptomatic pineal cyst. After the surgery, his patients no longer have symptoms and can continue living their life as it was. It is low risk, removed safely and is life changing. Patients spend 5 to10 nights in the hospital, and can fully recovered in weeks.


The surgery is extremely expensive costing $140,000 and Canada’s health-care system does not cover the cost of having the procedure done across the border.





Dr Dong H. Kim, M.D,

http://neuro.memorialhermann.org/medical-professionals/dong-h--kim,-m-d-/ 


Video presentation on the diagnosis and treatment of pineal cysts with Dr. Dong Kim

http://neuro.memorialhermann.org/pineal-cysts/ 


Cost Breakdown: ($140,000)


For international patients without insurance the cost is $130,000 (this includes the surgery, hospital fees, doctor fees, etc.) This must be paid upfront before surgery. If there is any complications or the surgery turns out to be more complex there may be money owing.


The additional fundraising (Golf Tournament) $10,000 will cover: 

• Airfare from Toronto, Ontario to Houston, Texas for surgery and follow-up

• Hotel costs

• Rental car

• Loss of work pay



Additional Fundraising


We are fortunate to have family and friends come together to organize fund raising events to help us raise money. Our goal is to raise $10,000 towards the surgery.


We are also creating shirts and apparel to help raise funds and to raise awareness. Please visit www.refuse-2lose.com (soon to come) to purchase any of these items.



Please support us to help get Ashley’s quality of life back and to save her from this debilitating condition.


Thank you for caring,

Nikola & Ashley





Resources



Success Stories

https://www.cbc.ca/news/health/desperate-canadian-heads-to-us-for-pineal-cyst-surgery-1.3306722 


https://www.braintumour.ca/5453/it-was-hard-to-be-my-own-advocate--kristinas-story-of-strength-and-perseverance 



Support Groups


https://www.facebook.com/groups/1250022118357103/ 

https://www.facebook.com/PGTCAustraliaNZ/ 

https://www.facebook.com/PinealCysts/ 




Canadians Getting Surgery Out of Country


https://legalblogs.findlaw.ca/legal-life/canadians-with-brain-cysts-forced-to-get-surgery-in-us-588/ 

https://winnipeg.ctvnews.ca/manitoba-woman-with-pineal-cyst-desperate-for-brain-surgery-in-the-u-s-1.2664688 

https://www.cbc.ca/news/health/desperate-canadian-heads-to-us-for-pineal-cyst-surgery-1.3306722 




About Pineal Cysts


https://rarediseases.info.nih.gov/diseases/10723/pineal-cyst 

http://neuro.memorialhermann.org/pineal-cysts/

Organizer

Nikola Matejic
Organizer
London, ON

Your easy, powerful, and trusted home for help

  • Easy

    Donate quickly and easily.

  • Powerful

    Send help right to the people and causes you care about.

  • Trusted

    Your donation is protected by the  GoFundMe Giving Guarantee.