Help Diana Fight a Rare Spinal Condition

Our names are Braden, Hannah, and Delaney and we started this campaign on behalf of our dear partner and friend, Diana, to raise medical funds for her as she currently battles a rare and debilitating spinal condition.

What happened?

In January 2022, Diana’s life completely changed. A snowboarding accident resulted in a whiplash so severe that she became bed-bound for weeks.

Her condition was initially misdiagnosed as a concussion, but after 10 months of advocating for her health, she was finally diagnosed with Craniocervical Instability (CCI), a condition in which the ligaments between her skull and neck (C0 to C2 spinal vertebrae) got so severely injured that they can no longer support her head up. Little did she know, a further diagnosis of Hypermobile Ehlers-Danlos syndrome, a rare genetic connective tissue disorder, had also put her at high risk of injury her whole life. To this day, Diana remains mostly bed-bound with a neck brace.

Before her accident, Diana truly lived life to the fullest. She was a dancer and loved doing outdoor activities including hiking, snowboarding, longboarding, rowing, and surfing. She volunteered for non-profits locally and globally, completed a Master’s in Public Health, and in 2019 moved across the country to start a competitive medical school program specializing in rural and remote settings. Diana’s dream was to help Indigenous communities in Northern Canada obtain access to culturally appropriate health care, an area of work that can be emotionally demanding and under-resourced. But this is our Diana: compassionate, optimistic, and always putting the needs of others first.

Formerly an active and cheerful person, Diana now lives with many neurological, physical, and psychological symptoms every day.

The basic acts of standing or walking, movements we all take for granted, are now a daily challenge filled with dizziness, “bobble-head” (feeling like her head isn’t attached), choking sensation, leg weakness, and a constant fear that even the smallest movement will re-injure her spine. Simple hobbies like reading a book or preparing a meal are no longer feasible for Diana, and she requires 24/7 care from her family.

On good days, she might be able to take a short walk around the block with someone holding her arm. On bad days, she has been hospitalized with debilitating (sometimes stroke-like) neurological symptoms.

The most challenging part has been not being able to work or complete her studies. Diana had to take an indefinite leave of absence halfway through her third year of medical school, and not knowing when (or whether) she can return has been the greatest heartbreak of all.

Is there a cure for Craniocervical Instability (CCI)?

Navigating treatment options for Diana’s condition has been traumatizing, complicated, and expensive. There is currently no straightforward “cure” for CCI globally and patients must undergo trial and error to find the right approach to manage this potentially chronic condition.

In Canada, CCI is not widely understood by health professionals and regenerative treatments above C2 vertebrae are not offered. Diana’s health providers in Canada have advised her to seek help from doctors in the United States where more CCI research and innovative treatments are undertaken. In doing so, she has finally been able to get a formal diagnosis but navigating her treatment plan continues to be an uphill battle, financially and emotionally.

What are Diana’s treatment options?

Over the last year, Diana and her family have spent $45,000 in out-of-pocket specialized diagnostic and treatment expenses across Canada and the United States (not including travel costs and her family's missed wages to accompany her).

These treatments include prolotherapy and platelet-rich plasma (PRP) therapy by a leading physician in Colorado, which involve injections into the back of her neck to promote ligament regeneration in her cervical spine. She also receives dynamic upright MRIs (not readily available in Canada) and sees a specialized Atlas Orthogonal (AO) chiropractor in New York to gently realign her vertebrae between injections.

This treatment combination has enabled Diana to hold her head up without a brace for longer periods and regain some ability to walk short assisted distances. However, the healing process is a rollercoaster of ups and downs, as ligaments become inflamed before they can rebuild, and Diana’s debilitating neurological and physiological symptoms persist.

Her next option is an advanced procedure called PICL, which involves extracting and injecting her own stem cells into her cervical spine via the back of her mouth. Diana’s physician in Colorado leads the only clinic in the world to have developed a way to successfully access her most injured ligaments. It is likely the only treatment that will resolve her persistent symptoms. Most patients see some improvement and a total of 2-4 procedures are usually needed to see increasing functional benefit. It is difficult to predict how Diana’s body will respond to this treatment as ligament healing can take 4-12 months, but if successful her head will quite literally be on tight again.

Otherwise, Diana’s only remaining treatment option would be to undergo an invasive spinal fusion (fusing her cervical bones together). She is committed to avoiding the need for this high-risk surgical procedure as the success rate is not always certain and it can leave patients with irreversible symptoms for the rest of their lives.

How can I help?

Diana, who has dedicated the majority of her adult life to helping others, now needs your help.

She is scheduled to undergo her first stem cell PICL procedure in August 2023 and will then stay in New York for 3.5 months to receive weekly post-operative care and monitoring from her AO chiropractor.

We are asking for the community’s help to fund the first round of this expensive, but promising, treatment plan: the PICL procedure alone is $17,000 and the AO treatments plus associated travel costs (accessibility-friendly transport and accommodation in Colorado and New York) will be an estimated $23,000. Diana is aware of this fundraiser and 100% of the money raised will go directly to her and her family.

We are hopeful that this new treatment plan will finally be the strong kickstart to Diana’s CCI recovery. We look forward to the day when she is freely back on her feet, can finish medical school, and returns to a life of helping others.

We are grateful for any contributions and thank you in advance for supporting this remarkable young woman.

Where can I find more information?

In true Diana fashion, she has tried to remain positive despite her circumstances, using her public health and medical knowledge to educate and uplift others about CCI on social media. For more personal updates about her journey, please visit her Instagram account.