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Fundraiser for 29 Year Old Chilliwack Man with Rare Sleeping Disorder

Chilliwack – Corey Jackson is a 29 year old Chilliwack Man with a rare sleeping disorder, and surgery to correct a few issues is expensive and not covered in Canada ( for the most part).

His aunt and uncle, Dave and Miriam, have started a Facebook fundraising page. Click here for more.

Cory Jackson/Facebook/2022

The background is detailed, but worth the read:

Corey is 29 years old. Your 20’s should be the best part of your life – filled with fun, friends, and falling in love. Corey’s 20’s have not been filled with any of those things. Instead, they have been filled with doctor’s appointments, specialists, 4 hospital sleep studies, and many misdiagnoses. They have been filled with headaches, confusion, brain fog, no energy, and complete exhaustion. Every day a struggle. Every year is worse than the last.

What causes these symptoms? Unfortunately, many things. Corey has been seen by a cardiologist, a rheumatologist, an ENT (ear, nose, throat), a pulmonologist and a psychologist. A lot of waiting for appointments, a lot of wasted time, a lot of soul-crushing dead ends. 

Corey always felt the issue to be sleep related. Everyone knows what it feels like when we have had a lack of sleep. That horrible, debilitating feeling is Corey – every day, for years and years. Corey often describes himself as a zombie. He would go to work, come home, go to bed, sleep 12 hours, and wake up feeling like he hadn’t slept. By age 26, he just couldn’t do it anymore. He knew this would be his whole life, and that is no life, unless he had a correct diagnosis…and the doctors couldn’t give an answer, so he had to find it himself. He quit his job and dedicated his time to finding a solution. This meant no income, no health insurance. A difficult decision, but the right one.

Obstructive Sleep Apnea. No one would think a lean young man in his 20’s could have sleep apnea. He doesn’t fit the bill, quite the opposite. OK, so get a CPAP machine and problem solved, right? Wrong. Corey tried for years to use CPAP, different machines, and different masks. Statistics show only 50% of people who need CPAP can successfully use it. All those years of trying to use CPAP were wasted effort…it was never going to work.

Corey’s issue is structural. His airway is so incredibly narrow, the CPAP air is hitting a wall. As he sleeps, his tongue relaxes and blocks his airway. This causes him to awaken 35+ times an hour. Very rarely getting into REM sleep, the good quality sleep which keeps a person functioning. Corey has a very recessed chin. It’s not actually his chin, it’s a very small lower jaw (mandible). This means his airway has no room. Like breathing through a tiny straw, and certain head positions in his sleep cause a kink in that straw, making matters worse.

Corey found a medical study from Spain published in 2019 describing everything he’s been going through, as well as a ground-breaking procedure to correct the structural issue causing Obstructive Sleep Apnea. A jaw surgery called Maxillomandibular Advancement or MMA. The surgery isn’t new, it has been used to correct a person’s bite for years, and more recently for cosmetic reasons. A surgeon would advance the jaw at most 9mm in these cases. However, if you advance the jaw by 18mm (on average) you can correct the obstructed airway. Here’s how it’s done: Your upper and lower jaw are cut, pulled out, rotated up, then put back together with plates and screws. It is very invasive, and incredibly painful, with a healing period that takes months. It also has a high rate of complications, particularly permanent nerve damage.

Next problem is finding a surgeon who can do that large an advancement. Surgeons don’t have the experience to advance twice the distance successfully and are not comfortable attempting it. Corey found the surgeon who performs MMA as a specialty here in B.C., but he only offered 10mm of advancement. A cure to Corey’s problem will only be solved by advancing double that. 10mm would not help. No surgeons in Canada are advancing that much. Which means looking in other countries and paying for it himself.

While looking for help world-wide, he would post questions on Reddit, and that is where he found his people. He was no longer alone in this. Other young, thin people with the same symptoms, same jaw structure, all looking for help from all over the world. Corey started a support group online for only those who fit the criteria. Corey has become an expert in Obstructive Sleep Apnea, and his support group has grown to over 350 members. He not only found a cure for himself but is sharing what he has learned daily and helping support and educate others.

There are only a small handful of surgeons in the world who can perform this surgery. Corey had consultations with several surgeons and did a lot of research. A member of Corey’s support group told him about his successful MMA surgery and about his surgeon in Spain, who developed a revolutionary way to do MMA surgery, Dr. Federico Hernandez-Alfaro. Corey had a consultation with Dr. Alfaro and concluded he is the best surgeon and the best choice, having the lowest complication rate and the most successful outcomes.

Corey’s surgery will be on September 7th, 2022. People often ask when they hear he is going to Spain, “Are you looking forward to going to Spain?” The answer to that is no. The location is irrelevant because this is no vacation; it is a very painful, invasive surgery. It will be hospital stays, regimented pain medication, and only being fed liquids for weeks through a tiny tube. All this in a strange, unfamiliar place where he doesn’t speak the language. The part of all this that Corey is looking forward to is finally getting this surgery he has waited a long time for and the beginning of a happy, healthy adulthood, only 1 month before his 30th birthday.

The surgery and travel will cost Corey $58,000. The orthodontic costs needed to get his new jaw to line up with his teeth is another $10,000. Corey has always been a saver of money. After graduating from BCIT at 21, he worked in Computer Support and Networking. He saved and invested most of his income, hoping to one day buy a house. Every penny he has saved will be needed to pay for this surgery. At one time, he had just enough. But the stock market has fallen, and he no longer has enough. After the surgery, he knew he would be starting financially from scratch with nothing. But he no longer knows how he will get enough money to pay for this life-changing, essential surgery.

If you are willing to help by making a donation, any donation, to help this young man who spends what little energy he has educating himself and others it would be so greatly appreciated. Corey would like to thank his Aunt Miriam and Uncle Dave for putting his story and fundraiser on Facebook. Please like and share. If you know anyone struggling with these symptoms, maybe they also have a recessed chin or already know they have sleep apnea – if they have questions, Corey is more than willing to answer them. One day this surgery will be the standard of care for Obstructive Sleep Apnea, but the medical field is not there yet. Corey has already given his 20’s over to these symptoms, and it’s time for him to finally start his life.

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