Please Support Jacob's CRPS Battle!

Vesna Higham is organizing this fundraiser.

Donation protected

This is our wonderful son Jacob. He is 25 years old and for nearly six years now, he’s suffered from CRPS (Complex Regional Pain Syndrome) – one of the most painful, debilitating conditions known to medical science.

His story is both heart-breaking and remarkably inspirational as we’ve watched him endure the relentless pain, suffering, and seeming hopelessness of this cruel neurological condition. It’s not easy to ask for financial help, but we hope that once you read Jacob’s story, you’ll understand why we’re reaching out for any donation you might be able to share to help us fund his expensive treatment at the Spero Clinic in Fayetteville, Arkansas.

Life Before CRPS …

Jacob has always been a cheerful, kind, fun-loving person whose big smile and infectious laughter light up every room. At 6’6” tall, he was an accomplished athlete – competing on the senior varsity high school volleyball, basketball, handball, cross-country, and track & field teams. He also loves adventure, hiking in the mountains, and the great outdoors.

Then, in 2017 while serving a humanitarian mission for our church in France, Jacob stepped into a pothole and turned his ankle. A slight, innocuous ankle sprain that should have healed in a few days, triggered the CRPS – though it took many months of pain, testing, and medical interventions to diagnose.

What is CRPS …

CRPS (previously known as Reflex Sympathetic Dystrophy Syndrome or Causalgia) is a rare, chronic neurological disorder affecting the central and peripheral nervous systems – resulting in constant, severe pain. It most often afflicts one or more limbs, typically after an injury, surgery, stroke, or heart attack.

CRPS is characterized by excruciating pain (totally out of proportion to the severity of the initial injury), inflammation, changes to skin color and temperature (Jacob’s foot became dark purple and ice cold), and complete immobility of the affected limb.

CRPS is known anecdotally as the “Suicide Disease” because the pain is so intensely incapacitating that too many lose hope. CRPS sufferers describe the pain as being “constantly on fire” due to damaged nerve pathways misfiring signals to the brain.

The McGill University Pain Index ranks CRPS pain (42 out of 50) as one of the highest thresholds possible: compared with amputation (40), childbirth (38), phantom limb pain (28), cancer (25), shingles nerve pain (22), fractures (18), and arthritis (16).

There is no known cure for CRPS and limited medical interventions to address the root issues related to this condition. The Spero Clinic is currently the only center in the world we’re aware of that specializes in CRPS – with an 85% successful remission rate.

Jacob’s Medical Journey …

After returning early from his service in France (December 2017), Jacob’s physiatrist performed a nerve conduction test, which confirmed nerve damage in the perineal nerve below his right knee.

From that test in early 2018 until today, Jacob has seen 23 specialist doctors and endured numerous medical surgeries and interventions, none of which has worked to relieve his pain or restore his mobility, including:

o Four spinal blocks;

o Hydro-dissection along the perineal nerve;

o Platelet-Rich-Plasma (PRP) injections;

o Nerve dissection surgery in Edmonton (to remove scarring along the perineal nerve);

o Dorsal Root Ganglion Stimulator surgery in Vancouver (which implanted permanent “electrical” leads to vertebrae tissue in his spine as well as a battery pack in his lower back to charge the leads); and

o Countless, ongoing physiotherapy modalities.

Jacob has not been able to walk (or bear any weight at all) on his right foot for over five years now. He was initially on various types of crutches, until he discovered the iWalk “peg leg” device that has given him the freedom of hands-free mobility while he continues his search for remission from the chronic pain.

He’s tried all the typical drugs indicated for this condition, but nothing short of strong, addictive narcotics has worked well – and even then, Opioids only numb the pain, they don’t alleviate it fully or address the root cause of the pain. He currently has to take very high doses of Gabapentin every day to manage the ongoing pain, in addition to periodic doses of Percocet when the pain gets too much to handle.

Perhaps most worrisome to us now is that the CRPS appears to be moving to his left (good) foot, with growing pain experienced in that foot for the past six months.

Unfortunately, this is a fairly common characteristic of CRPS, with many individuals eventually becoming wheelchair-bound, or suffering full-body CRPS.

Our Plea for Help …

Due to this prolonged suffering, Jacob was at the point of seriously considering below-knee amputation, when about a month ago by the grace of God, we were referred by a friend to the Spero Clinic.

After all Jacob’s been through (relentless pain; multiple drugs, blocks, trials, surgeries, and trauma; and the emotional roller-coaster of repeatedly holding out hope only to be disappointed again and again that nothing actually works), it now seems almost too good to dream that this clinic could help Jacob walk again.

It’s hard to even hope for that kind of possible future for Jacob, though we desire it with all our hearts.

We wish to assure that ALL money raised in this campaign will go directly toward funding this four-month, intensely grueling rehab program at the Spero Clinic (which costs $70,000 CDN, including supplementary medical support, a PRN unit, and other specialized testing and therapies), as well as travel, accommodations, food, and incidental expenses for him (and his mom as support) during the months of May through August 2023 inclusive.

We’re reaching out to our caring community for help covering the costs of this specialized treatment. Any contribution, large or small, will be greatly appreciated and will help Jacob receive the medical care he so badly needs to walk again, to get off the daily pain meds he can’t function without, and to gain back the qualify of life most of us take for granted every day.

We will post regular updates once Jacob’s treatment program starts in May 2023. Thank you from the bottom of our hearts for your caring and kindness – and God bless you, every one.

The Higham Family

Red Deer, Alberta, Canada

UPDATE #1 - May 17, 2023

Things have been going well so far with Jacob … we were both worn out by the marathon trip and everything involved with that, but we’ve settled in nicely and are enjoying life here in Arkansas.

Jacob’s experience has been really, really positive and encouraging. The clinic has been AMAZING. It’s been so good for Jacob to be around such a positive, hopeful environment and to be around so many others with CRPS who’ve gone and are going through what he suffers … and are making remarkable progress and recovery.

Monday, we met a dad and his 16 year old daughter from Norway who have been here since January. She came into the clinic in a wheelchair (full body CRPS). She’s now walking … slowly and not 100% yet, but WALKING!!

It’s unbelievable the stories and the moving display of resiliency, overcoming, drive, determination, and power of the human spirit here at the clinic. It’s absolutely miraculous and so incredibly inspirational. We have REAL HOPE here and reason to believe Jacob can make a full recovery as well .. and after what he’s been through over the past six years, that’s just so huge … there are no words.

I spent the entire day in the clinic with him on the first Monday and observed many of the treatments he'll be undergoing over the next few months.. Fascinating. A totally holistic approach to re-enervating the nervous system, re-training the brain, and rehabilitating muscles and tendons that have long atrophied and withered down.

It’s a slow, painful process that takes many months to effect a full recovery, but Jacob is so positive and eager to work hard and do whatever it takes. I’m so proud of him.❤️

So things are going well with Jacob (which makes me happy), but it’s a lot of work, lots of effort and he’s just EXHAUSTED at the end of every day.

Wednesday last week he came home from the clinic, had a small bite to eat and went to sleep at 8 pm … and slept in until 8 am the next day!! It’s hard work and takes a huge toll on his body trying to make these seismic healing changes.

And some of the treatments are quite painful to endure, so that takes another toll on his body … but he’s been such a trooper through it all and seems to be managing well and is happy … and we’re seeing small progress and positive results (he had to turn off his implanted electrode stimulator for some of the treatments, and after a few days in the clinic, he decided not to turn the stimulator back on … and he’s been managing without it!).

One of his doctors said they’re planning to start some weight bearing work in a couple of weeks. Wait what?

That’s shocking to me, since he’s not put any weight on that right leg for nearly six years … but I trust they know best, since they’ve treated hundreds of CRPS afflicted patients.

Anyway, that’s our update for now. Have a great day and rest of ur week … and thanks again for your caring and support! xo

UPDATE #2 - June 3, 2023

So much has happened since our last update on May 17th … where to start? First off, Jacob is doing AMAZING!! Like so amazing. This clinic is truly remarkable … they really know what they’re doing when it comes to CRPS.

This past week, Jacob took his first weight-bearing steps in nearly SIX YEARS!! I was gobsmacked. He was initially holding hands with his therapist for support, but he actually took steps on that leg!! And then every day since, he’s been steadily improving to the point where he’s now walking on his own without support – again, baby steps … but so, so remarkable to me that he’s able to put weight on that leg!!

They utilize A LOT of electricity and current work in so many of their therapies … it’s all very interesting and fascinating to me. I’m soooooooo happy we found this clinic!! They are confident he’s going to be walking again with a FULL RECOVERY by summer’s end … they say his body is responding very quickly to all the treatments. What a blessing!!

I’m so happy for him, I just don’t have the words to describe. He sure does get EXHAUSTED every day, though … like drop-dead exhausted. He comes home after clinic (usually around 6 p.m.) and doesn’t even feel like eating some evenings cause he’s in pain (but he does), and then goes straight to bed and often to sleep by like 7:30 or 8 p.m. – and then sleeps in until 8 a.m. the next morning.

I’m so proud of him and how hard he’s working. He’s very determined to do everything he needs to do, including a healthy diet that excludes some foods we’ve discovered he’s sensitive to after specialized dietary testing (like dairy, wheat, eggs, coconut, and pineapple).

Anyway, that’s our update for now. We’re both doing well and enjoying our time here in Arkansas. The people here are so warm and friendly (many with lovely, heavy, southern drawls!) and the landscape is just gorgeous (thick, beautiful forests everywhere and so many nature trails, waterfalls, and lakes in the area).

Thanks again everyone for your caring and support – it means so much while we’re away. Have a great week! xo

p.s. Here are a couple of pictures to enjoy, along with a video of Jacob walking! I tried to upload a few others as well, but for some reason, it wouldn’t let me. So, here are links to those videos on YouTube:

First Weight Bearing – May 23, 2023: https://www.youtube.com/shorts/avpO_IhQir4

Jacob’s Solo Walk – May 31, 2023: https://www.youtube.com/shorts/6nPVM6Tnqhw

Suspension Bridge Trail Hike - May 26, 2023: https://youtube.com/shorts/597QUWuXWdI?feature=share

Update #3 – June 25, 2023

We are so happy to report that Jacob continues to progress and improve in leaps and bounds!! He’s absolutely thriving at the clinic and making such incredible progress – it’s honestly hard to fathom.

He now walks on his right leg every day - still slowly and laboured, but he's walking!! About one month into treatment, they started weight-bearing therapies, then marching stand-still, and then eventually walking. At first, it was all holding on to his therapist's hands, but eventually, he began to walk on his own. At that point, we bought him a cane to support his efforts, however, now he’s even ditched the cane and walks everywhere on his own.

Slow. Steady. Progress. Bravo Jacob!!

There are no words to describe our relief, joy, and gratitude. This truly is the miracle we've been hoping and praying for. I'm still in awe every day when I see him walking around ... it's still hard to wrap my head around the reality that he can actually have a full recovery, but his doctors are all very confident that he will indeed.

He still has a lot of work to do - as noted, his walk is slow, tender, and difficult, but it's really coming along. We're told it takes time to retrain the brain to establish new neural pathways after so many years of damaged nerves sending garbled signals to the brain – so he’s got 6-8 weeks left at the clinic. There's a lot to overcome and build back up, but he's so committed and determined, and we just couldn't be happier for him.

Thanks again for your love, support, and prayers … it all means so much and we couldn’t be more grateful. God bless you all. xo❤️

Crystal Bridges Museum of American Art – Bentonville, Arkansas

Two days ago, Jacob and I went to this incredible museum just 20 minutes north of Fayetteville (FREE to the public!) – and here are a few pictures of Jacob walking around the museum pretty much the entire time without his cane for a couple of hours. Although, he paid for it the next day as he was so wiped out, he spent nearly the entire day in bed yesterday!!

Also, watch the videos at the end of him walking … so amazing!!