Marissa is a 32 year old woman who requires life-saving surgical treatments in the US and she needs your help to make it happen. 

Marissa was a high level athlete her entire life including High School and University. Earning a Bachelor of Science degree in Kinesiology was step one toward her ultimate goal of Medical School. An avid volunteer, her dream was and still is to help others! Diagnosed with a rare genetic condition and having endured numerous brain and spinal surgeries has slowed Marissa’s life down to a crawl but she refuses to give up. She requires 3 surgeries in Washington, DC totaling $120,000  to help her improve to the point that she will be able to resume studies leading to a career in healthcare. Without these surgeries, Marissa is limited to being upright 30-40 min at a time and spends the majority of every day laying down in bed.  This is not living!

A consultation with a Neurosurgeon in the US in December 2019 highlighted the urgent need for this surgery. This doctor was willing to move his surgical patients around to fit Marissa within the following week but we were unable to move forward due to a lack of funding. It has been recommended that Marissa have this surgery in February 2020 leaving us a very short window to raise the necessary funds.

Marissa became ill with a number of seemingly unrelated conditions during her second year of university. She was in and out of hospital frequently which did slow her down but she persevered and graduated with her BSc Kin in 2011. Her ill health forced her to delay applying to medical school and so she pursued less physically demanding studies and began a 2 year Master in Occupational Therapy program in 2011. Halfway through this program, in 2012, Marissa became too ill to continue her studies or to even live on her own and she had to move home with her mother.  Since this time, Marissa’s overall health deteriorated rapidly. There were many ups and downs as she received diagnosis upon diagnosis and navigated her way through various avenues for treatment, all of which were not available in Canada and required seeking treatment in the US.

Marissa has multiple, serious health conditions, that have drastically affected her quality of life over the last few years. Marissa suffers from a rare genetic connective tissue disease called Ehlers Danlos Syndrome (EDS). This results in faulty collagen throughout her body making it a multi-systemic condition. Collagen is found throughout one’s body; organs, skin, joints, blood vessels etc. It literally is the glue that holds the body together. This means the symptoms of EDS can be very far reaching, affecting most parts of the body.

Marissa's joints have deteriorated throughout her body and her joints sub lux daily. Her muscle tone has declined, also causing more subluxations and pain. Marissa also has a large number of co-morbid and serious life altering conditions attached to her EDS diagnosis.

She has Dysautonomia including Postural Orthostatic Tachycardia Syndrome and Orthostatic Intolerance, which affects her autonomic nervous system. This results in Marissa having rapid increases in heart rate. She gets palpitations just from standing and her blood pressure drops from postural change. This results in fainting and chronic fatigue. Marissa has a picc line to provide daily IV hydration treatments directly into her blood stream.

Marissa’s weight has declined by over 100 pounds over the last few years, as she suffers from Functional Gastrointestinal Disorder, including Gastroparesis, related to her EDS. This means she suffers from constant nausea, gets sick daily, suffers bowel obstructions and finds it very hard to eat. Marissa is very limited to what she can eat, must eat small portions and some days can’t keep anything down. This means she is weak and easily fatigued. The nausea comes on very suddenly and Marissa requires IV anti-nausea medication regularly.

Marissa also suffers from Mast Cell Activation Syndrome due to her EDS. (MCAS) - is an immunological condition in which mast cells inappropriately and excessively release chemical mediators, resulting in a range of chronic symptoms, sometimes including anaphylaxis or near-anaphylaxis attacks. Primary symptoms include cardiovascular, dermatological, gastrointestinal, neurological and respiratory problems. This means Marissa develops allergic reactions usually leading to anaphylaxis for no apparent reason.

Because Marissa's case is complex, she has deteriorated rapidly. She has had to seek expertise in her conditions from the United States. All of her trips to the US have been self-funded although approximately $11,000 in donations were received. There has been no financial assistance from the Canadian healthcare system. The surgeries have literally cost hundreds of thousands of dollars up to this point, but unfortunately all these trips are necessary, as there is no expertise available in Canada to fully manage her care and declining condition.

Marissa has had surgeries to address Tethered Cord Syndrome (Tethered Cord Release surgery), Intracranial Hypertension (Peritoneal Shunt to drain excess fluid off the brain) and  surgeries to address Cranio-cervical Instability at 3 different levels.

Marissa requires an additional surgery to correct the remaining instability in her cervical spine. Marissa is able to be upright for only 30-40 minutes before excruciating pain forces her to lie down.  Marissa also suffers from imbalance, sensory loss, hearing issues, sight issues and brain fog all attributed to this much needed surgery.

In some ways she has become a shadow of her former self but her strength, courage, positive outlook and smile remain.  Marissa is an inspiration to others and reaches out to try to help others even in her weakened state. Many times she has drawn upon her limited strength to counsel complete strangers – these conversations usually end with heartfelt thanks to Marissa, hugs, some tears and blessings.

Marissa often seems healthy to the outside world, because of the invisible nature of this condition. She is optimistic that with the right care and advice, that things will improve. Marissa remains determined to pursue studies in the healthcare field in order to be able to help others afflicted with EDS.  Marissa is a caring person and a dedicated aunt to 8 nieces and nephews who love her dearly. She deserves a future that allows her to participate in living the life that she has dreamt about her entire life. We are determined to help her achieve that dream.

We are very thankful for family and friends who have kept Marissa in their hearts and prayers and we believe that the Lord has a plan for Marissa and that she is intended to help others.

Any assistance you could provide is accepted with heartfelt thanks!

Note:

Estimated costs for Marissa's 3 surgeries are:

-  Nerve Decompression #1 $22,000 USD  (estimate $30,000 CDN)
        ** Scheduled for Tuesday Feb 4th in Washington, DC

- Nerve Decompression #2 $22,000 USD  (estimate $30,000 CDN)
         ** To be scheduled 1-2 months after Decompression #1

- Cervical Fusion $60,000 CDN

        ** Praying that this surgery may be pushed out by months pending the success of the first 2 surgeries

All funds from GoFundMe are received by Marissa's mother Brenda who is running this campaign. The funds are transferred into a savings account and will be used to directly pay for medical costs ( Surgeon, Medical Facility, Anaesthetist, etc).