Read Part 1 here: My Diagnosis
There was no question in my mind that I had to fight back against the disease that was ravaging my muscles and contorting my spine.
My mom and I now had to figure out a way to come up with $15,000 for stem cell treatment – I had read and heard that stem cells were doing amazing things and helping with all sorts of conditions.
With no other option other than going into debt, my mom began to talk with her friends. She explained the dire need for her only daughter, and the financial burden that would come with it. Her friends knew that this was something they didn’t want her to take on alone, and quickly brought up the idea of hosting events in order to raise money for my treatments. Not only did they come up with the idea, but they enthusiastically offered to help as well.
Although my mother and I had different experiences and emotions surrounding my diagnosis, one thing we had in common was that we were attacking the disease on our own. Facing all the obstacles and all the struggles alone. In the past, bringing new information to the doctors in hopes that they would support us in our search for answers was always met with cynical and demeaning comments.
Having my mom’s friends step forward to offer their help gave us an overwhelming feeling of relief, of finally having people in my corner, fighting for me, believing in me, and wanting to see my health return. This is when Stem Cells for Brynn was born, a grassroots non-profit committee that consists of our friends and supporters.
Mom & I
Struggling with a disease or disability can feel incredibly lonely. The world around you zooms by at its frenetic pace, with all these people that have no physical worries about whether or not they can make it into the restaurant, or if the washrooms will be accommodating. These are just basic human activities that can be easily taken for granted. I have found myself sometimes feeling envious; not envious of what others can do that I can’t – but of what it feels like to be able to fade into the background. To not be noticed all the time. To go into a store and be able to stay in my own world instead of noticing people stare at me.
Starting Stem Cells for Brynn would mean being in the spotlight and letting people directly into my world – showing them how hard having a disability is. I struggled with this at first, with opening myself up to potential ridicule. I didn’t want to be vulnerable, I didn’t know how. I was always proving to myself and others what I am still able to do, trying to prove to them that I am not as disabled as I may appear. To go from that frame of mind to full vulnerability and trust was new. I had to reveal my limitations and offer a glimpse of what it is like to fight a disease.
This first event we held served as a wake-up call. I realized people weren’t coming to pity me or see something bizarre. They were coming because of the kindness that lived inside them, the compassion and empathy they had for their fellow man. My friends made it out to events to show me that they want what’s best for me, and they want to see me happy and fulfilled.
A recent benefit for Stem Cells for Brynn
People came out not only because they believed in me, but they also believed in stem cells and the power they have. I realized at that moment that it wasn’t just about me getting treatments, it was spreading awareness about stem cells and how we need them to be available in Canada.
We have a massive stem cell research facility in Ottawa, the Sprott Centre for Stem Cell Research. I had the privilege of watching a panel discussion between several doctors from the Centre. I hung onto every word they were saying, hoping that maybe, just maybe, they would surprise us and announce that the treatments would now be available in Canada.
One woman in the audience raised her hand & asked how far off we were from human trials. With bated breath, I waited to hear the answer. One of the doctors replied that it would be another 10 to 15 years. BEFORE human trials! I don’t have that long to wait.
The most infuriating part is that there is a veterinary clinic in southern Ontario performing the exact same treatment on dogs with hip dysplasia that I receive in the United States. They take my own stem cells, activate and purify them, and later inject them back into my body. The veterinary operation basically uses the exact same activation properties, and the same process of stem cell removal.
Some people are still stuck in a mind-set of a time when stem cells were controversial. Certain therapies were frowned upon by some religions, and that stigma still persists. I want to spread awareness that there are non-controversial stem cell treatments that involve the patient’s own stem cells. There is no fear of rejection, and it is a one day process. We have thousands upon thousands of dormant stem cells in our fat tissues. Stem cells are non-programmed cells, they can become all types of tissues.
Stem cells are smart. They go where there is distress (otherwise known as inflammation) in the body. Recently, there was a study done on a patient with COPD (a lung disease). They flagged the stem cells so doctors could see their movement when they were injected intravenously. Although the stem cells weren’t programmed to become a certain tissue, they ‘instinctively’ clustered in the lungs. Within days, there was improvement. Within weeks that became noticeable, and within months the doctors declared a significant improvement.
I have my body’s own medicine inside of me. I have received 6 treatments thus far, and I honestly can’t remember a time when I felt this healthy. I am not saying I am cured, but what it has done is give me some of my life back. It has given me back my independence. Because I was diagnosed when I was 12, there are years of damage to repair – some of which may be irreparable. It is a waiting game. The medical team I have supporting me, from chiropractors to trainers, utilize the stem cells as much as possible, so once they are injected, they need to know where to go.
After the first couple treatments, I started noticing better nerve reaction, I was able to function quicker without a need for downtime to re-group and figure out a strategy to tackle the next task. Instead I was able to just do it, without conscious thought. My mom noticed that my shoulder blades weren’t sticking out as much, meaning that the surrounding muscles were becoming stronger. I was becoming less and less dependent on her. I didn’t tire as easily and my endurance skyrocketed. Others around me saw my face become stronger and more even. Getting up and moving around was easier, and my posture was straighter. Because they’re my own stem cells, there is a natural positive progression – they work with my body. I see drastic improvements while they are occurring; transitional improvements are pleasant and not jarring.
Still, I must stay realistic. Patience is my friend. The future is bright. I have learned that people are good at heart, and that we want to help our fellow man. Although I’ve had to overcome many obstacles and I know there will be many more, I feel powerful. Most of all, I want to show others who are suffering that they have it within themselves to overcome their problems. We all have something to tackle, something to overcome.
My earnest hope is that my story can give people back the freedom they thought they had lost, and control over a path they thought they couldn’t alter.
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