Greg's Gift of Hope

My name is Bernadette Greif  and my husband is Greg. Many of you know we have been on a painful journey over the last few years but so many do not. My goal is to help Greg and our family and to spread the word for awareness, prevention and help in identifying this rare condition before it debilitates.
In late 2012 Greg joined a beginner adult roller hockey league, as our son had always played roller before he began club ice hockey. Greg was checked into the board by an experienced younger player in their championship game. Checking in roller hockey is not allowed,  therefore the protective gear to prevent spinal injury is absent on the rink. After thinking he only suffered a roughed up shoulder, he moved on with minimal medication. One month later I had to rush him to the ER with unbearable back pain. An MRI revealed a blood clot on his spine in the thoracic region. The clot was breaking apart and bleeding down his spine causing the unbearable pain to spread down his back. He was hospitalized for 5 days. Greg had a follow up MRI 4 weeks later, per neurosurgeon's order, and was dismissed as a patient. We were grateful he was out of pain and were told the clot dissolved! 
In Spring 2015 Greg had a chest virus causing him to continually cough. He has been hurting and uncomfortable since then and started on a journey to find out what was wrong. After many PT visits, MD visits, chiro visits, X-rays, labs and medication, he underwent a cervical fusion/disk replacement June 2016 to relieve pinched nerves in his neck. Some of the the pain remained, then got worse. With new testing and imaging in September 2016 he was diagnosed with Syringomyelia and adult tethered cord from the trauma. The bleeding on his spine caused scarring and adhesions that have blocked the normal flow of CSF around his spine. The fluid has been forced into his spinal cord creating a very large thoracic cyst, putting pressure on his spinal cord and nerves. He is suffering from pain and neurological deficits have started, some are probably permanent. By the time Greg was diagnosed and found the specialists he needed for this rare condition, the risk of any spinal surgery was greater than the wait and observe approach. His condition has now progressed with a new syrinx in his cervical region expanding towards his brain and more neurological deficit present.
He can no longer wait and put off the high risk surgery.
If we wait it will continue with irreversible nerve damage and possible paralysis. He still has the risk of paralysis with the surgery. This has been very hard on our entire family unit, but especially Greg.
We have exhausted all funds for medical over the last
2-1/2 years. He will be inpatient for approx 5 days and have a 2 month recovery period, possibly working from home the second month. We now need help with large in and out-of-network deductibles and copays to see the only specialists that treat this condition in the Western United States. We have/will have additional travel/lodging expenses as well as lost wages. 
We have always been givers, helpers, volunteers and now ask for your help. As hard as this is to do, we are asking for financial  help and prayers for upcoming surgery and healing on September 18. 
Thank you so much,
The Greif Family
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Bernadette Greif 
Mission Viejo, CA

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