Having your child beg you to cut off their leg is heart-wrenching and never something you would ever think to hear as a parent.
Our daughter Mackenzie is a shining light of hope. Before her diagnosis of Complex Regional Pain Syndrome (CRPS) in early December, she was an active and passionate young woman. Mackenzie was a competitive cheerleader, avid skier and swimmer. She put so much of herself into her sports and dreamt of one day competing with the California Allstars cheerleading team.
Mackenzie dreams large and is preparing for her future in medicine. She aspires to become a pediatric Oncologist and help improve the quality of life in children around the globe. She has always been passionate about life, family, and the healing of others. Instead of dreaming about her future in cheerleading or in medicine, she is now dreaming of a day without debilitating pain. Mackenzie goes to sleep at night hoping that she is well enough to go to school the next day and is worrying about test scores and the pressures of missing so much time. The medications she is on to help manage her pain come with a slew of side effects, which at times makes it impossible for her to stay awake or concentrate and also provides little to no pain relief. Even more, this medication will not stop CRPS from spreading to other parts of her body.
WHY MACKENZIE NEEDS EXPENSIVE SPECIALIZED CRPS TREATMENT IN THE U.S.
Currently there is no single program in Canada that combines the specialized techniques used to restore balance to the central nervous system. We have found that throughout Canada there are some individual treatment options, but they are geographically dispersed and are unable to be completed concurrently. The challenging part to finding a treatment option in Canada is that it not only has to exist, but the practitioner needs to have experience working with CRPS patients. Not just any practitioner can work with CRPS patients because if aggravated or injured the CRPS can spread to other body parts and internal organs.
Specialized expertise is crucial. I need to get Mackenzie intensive specialized rehabilitation treatment in the U.S. as soon as possible to restore balance of her Central Nervous System and decrease the chances of her CRPS recurring. The Spero Clinic is the only clinic in the world that offers their unique neurologic rehabilitation program. This program leverages the synergies of Oxygen Therapy, Katman Vagus Nerve Therapy, Magnetic Resonance Therapy, Neuro-muscular Re-education, Scar Tissue Therapy, MEND Frequency Specific Micro Current, Detoxification, Systemic Neural Adaptation, NIN treatment, and Cereset. This program has led to an 84% remission rate because of the unique collaboration of treatments and specialists working concurrently to restore balance to the central nervous system.
“The incidence of remission is low. It is highest in teens, especially if they are diagnosed within 1 to 12 months and treated aggressively.” rsdhope.org
“Our system is like a cookie recipe. You cannot pick and choose individual ingredients and expect the same outcome as when all treatments are used together. Synergy is vastly important!” Dr. Katinka, Spero Clinic
WE NEED TO RAISE $100,000 FOR MACKENZIE’S SPECIALIZED TREATMENT TO COMBAT THIS DISEASE AS SOON AS POSSIBLE!
The longer we wait, the harder her recovery will be. Normally, we would never ask for outside help but as a parent who wants only the best care for their child, we ask that you take the time to read her story and consider making a donation to help our family through this complex time. If you can’t make a donation at this time, we understand and ask that you please share her story.
HOW CRPS IS AFFECTING MACKENZIE
Mackenzie’s strength and courage to this point has been inspirational. She has remained positive and is greatly appreciative of the limited mobility she does have. CRPS has robbed Mackenzie’s ability to walk but has not crushed her spirit and her hope of remission.
While Mackenzie is in constant agony, she's not letting it stop her from living her life. It just looks a little different now. She is grieving the loss of her old self and learning to adjust with who she is now. Mackenzie would be the first to tell anyone that she didn’t see this coming. None of us did, and had no idea what CRPS was.
The obstacle we face is the lack of awareness in the Canadian medical community regarding CRPS. I cannot tell you how many physicians, nursing staff, and specialists we have seen who had no idea what was causing her symptoms and the physiological changes in her body.
We met with doctors and specialists in many fields and no one knew what was happening to her. Some said, “It was all in her head, and that it was attention seeking behaviour." It was difficult to hear this as a mother, especially when you see the physiological changes happening before your eyes. There were a few specialists who took it upon themselves to help her find a diagnosis and without them, Mackenzie might still be in the dark.
Her pain and perception of pain has caused her to fear touch and as a parent, not being able to touch your child is the single most difficult thing to go through when trying to comfort them. She has extreme sensitivity to touch, clothing, and blankets. Even non-painful stimuli such as water, air and sometimes even noise can cause immense pain.
She has been walking on crutches for a little over 5 months and at times is confined to a wheelchair because her pain is so great and her medications make her tired. As time goes on, we are noticing that Mackenzie is losing interest in the things she likes. We knew that depression was a definite possibility, especially with chronic pain, and we were prepared for it but what we weren’t prepared for was how hard it makes every other part of her treatment.
WHAT IS COMPLEX REGIONAL PAIN SYNDROME (CRPS)?
CRPS is a progressive disease of Autonomic Nervous System, and more specifically, the Sympathetic Nervous System. The pain is characterized as constant, extremely intense, and out of proportion to the original injury.
The pain is typically accompanied by swelling, skin changes, extreme sensitivity, and can often be debilitating. It usually affects one or more of the four limbs but can occur in any part of the body, and in over 70% of victims it spreads to additional areas.
DID YOU KNOW THAT CRPS IS RANKED AS THE MOST PAINFUL FORM OF CHRONIC PAIN THAT EXISTS TODAY BY THE MCGILL PAIN INDEX? MORE PAINFUL THAN CHILDBIRTH OR LIMB AMPUTATION.
This index is used by doctors around the world and is considered to be a valid, reliable, consistent, and above all, useful instrument.
HOPE FOR MACKENZIE
Dum Spiro Spero means, “While I breathe, I hope” in Latin.
There is hope for Mackenzie. We have to believe that. We have faith that there will be a greater understanding and awareness of this disease. While researching for CRPS specialists, Mackenzie found an article of a young Australian girl named Stella Artuso who has had CRPS for 5 years and was going to the Spero Clinic in Fayetteville, Arkansas in November 2019, to begin treatment. She hurt her ankle during a game of touch football and developed the disease. In her own words,
“It feels like someone is drilling through your bone, like you are just on fire all the time.”
Mackenzie immediately got to work and researched the Spero clinic, what their specialties were, what their remission rates were, and joined their social media pages to follow their stories. Set up by Dr. Katinka van de Merwe, the clinic uses a comprehensive approach to restore balance to the central nervous system. “We are reactivating the nerve, waking it up and finding it is massively beneficial to these chronic pain patients,” Dr. Van de Merwe said. Our hope is to be able to send Mackenzie to the Spero clinic for the 12 week session. We reached out to the Spero Clinic in December and spoke to Anna who is their patient advocate. Anna answered our call on a Sunday while at home with her children. She stayed on the phone with us as we wept and reassured us that Mackenzie was going to be okay and would get her life back.
UPDATE: Stella hit ZERO pain for the first time in 5 years during the week of February 16th, 2020.
UPDATE: Stella is reaching the end of her treatment at Spero and is now able to walk. She has kicked a soccer ball for the first time in 3 years! GO Stella!! March 14th, 2020
This image may be hard to look at and I know for Mackenzie it was a difficult and very personal photo to share but she's brave and she knows that this isn't forever.
CRPS information and videos
https://www.youtube.com/watch?v=zZhWVEn4uHU This video explains what I can't. It's a must see!
Spero Clinic on Social Media
WHERE YOUR DONATION IS GOING
Your donation would help to cover Mackenzie’s treatments, tests, and therapies. It would help her family with travel expenses from Canada to the U.S., meals, and accommodations while in Arkansas.
Patients pay on average $3,000 US per week for 12 weeks ($36,000).
This includes all of Dr. Van de Merwe’s recommended treatments. Cost can increase, and treatment can last longer depending on the complexity of the patient’s case.
The cost of therapies not included in Dr. Katinka’s treatment: blood tests, allergy panels, chiropractor, occupational therapy, other specialized therapies depending on the complexity of Mackenzie’s case.
PLEASE HELP THIS SWEET GIRL GET HER LIFE BACK. No donation is too small. Thank you in advance for all of your support. Funds will be withdrawn and managed by Mackenzie’s mother, Catherine.