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As many of you know, we are hoping to go to UCLA to participate in a clinical research study for Chronic Traumatic Encephalopathy (CTE). He was originally scheduled for early January, then this week, but again we were forced to reschedule for financial reasons. Currently, he is scheduled for April 13-15.

The plan is for Michael to meet with a neurologist to have an evaluation done at the UCLA Center for Brain Injuries to get a "baseline" of where he is so they can monitor him and note his changes over the coming months. When a clinical trial comes, he will be automatically included.

Michael has ALSO been approved to see Dr. Giza, one of the leading neurologists that put together the clinical evaluation tool for the UCLA Study on CTE that was done a year ago on the NFL football players. This is HUGE for him! It will give the doctors here direction on symptom management as well as give us a professional written evaluation to be used when we finally get the disability hearing we've been waiting on for months!!

We need your help to get there though! The cost associated in going to UCLA is high. The doctors at UCLA are all "out of network" through our insurance. Add to that the travel, lodging, time off work for me, etc. and it all adds up quickly! With Michael's disability STILL pending we are already struggling financially. While we wait, the medical expenses of frequent appointments, prescriptions, labwork, tests, hospitalizations, etc., along with regular household expenses just keep coming.

The fundraising page below was created over a year ago when he got sick again. It has been updated and renewed to help get him to UCLA. We humbly ask that you join us in prayer for financial provision, and that you consider helping by using the link.

We thank you from the bottom of our hearts for joining us in prayer and carrying us through this journey with all of your love, support, and prayers!!

Another Door Open!

We posted a few months back about Michael going to UCLA this spring to participate in a clinical research study for Chronic Traumatic Encephalopathy (CTE).  We are currently scheduled to travel there at the end of the month to meet with a neurologist to have an evaluation done to get a "baseline" of where he is so they can monitor him and note his changes.  The benefit of going is that when a clinical trial opens....  he will be automatically included.

Well another door has opened that we are considering.  We have been in contact with a team of neurologists, neurosurgeons, and  other doctors about a new clinic opening in Chicago this upcoming June.  The clinic's goal is to assess and treat patients who have brain injuries and suspected CTE (remember...  it can't be 100% diagnosed until after death).  They will also be conducting studies on brain injuries and the role they play in CTE, Alzheimers, and Parkinsons.

We haven't made any decisions yet on the Chicago trip....  but in talking to the team via email it appears that the benefit of going there is they will be running a clinic and be able to TREAT Michael....  not just have him participate in research.

The cost associated with going to Chicago is pretty high......   time of work for me, travel arrangements for all of us, plus the copays and deductibles associated with that kind of care.  If you feel led to help with the costs, the link below takes you to the fundraising page.

Our prayer requests right now revolve around all of that...

- PRAISE that he has these doors opening and that we are finally feeling like we are getting somewhere!!
- Prayer for financial provision to be able to MAKE these trips
- Prayer that Michael will be up to traveling on either trip and the toll on his body will be minimal
- Prayer for peace to accept whatever the outcome is of both of these trips

Michael's Story....

Michael's story starts back in high school....

Michael has had COUNTLESS concussions from middle school on up as a result of sports.  He was a ROUGH player....  and played it all:  basketball, football, track, golf, and baseball.  He has been taken off the court/field multiple times during his high school career and taken to the hospital for treatment of a concussion.  About half of the concussions he’s had he has lost consciousness and they all had effects that lasted several days before they resolved.  Finally, his junior year his family doctor said no more sports....  that was in 1989.    But that wasn't the end of his head injuries...

In 1994 he was working in a factory that made doors and a 50+ pound solid steel door fell off something above him landing on his head.  Again, he was taken unconscious to a hospital in Indiana where he was treated for a bad concussion and head injury.  After that, he went retail and did ok for while with a knock in the head here and there and maybe 1 or 2 concussions, but not as bad. 

But...  Another came in 2006.  He was the Projection Manager of a local movie theater in Winston Salem, NC and was working on a projector.  A 10,000 watt bulb was inside a metal encased box that it was housed in and exploded with Michael’s head less than an inch away from it.   He was unconscious, unresponsive, and unstable.  They worked on him for over 30 minutes before finally stabilizing him enough to transport him to to Wake Forest Baptist Medical Center where he was treated for a concussion and closed head injury.  He lost a good bit of the hearing in his left ear as a result of this one and the effects lasted quite a while. 

It was in 2011 that he really started noticing a decline in his health and cognition.  Finally, August 1, 2012, Michael had surgery for Chiari Malformation with Syringomyelia (basically brain was herniating out of the skull into the spinal cord and had created a backup of spinal fluid not only in the brain that couldn't get out, but in the spinal cord that couldn't flow) after suffering for months with headaches, dizzy spells, numbness, memory loss, loss of consciousness, and aphasia.  They thought this would fix it all...  Surgery was succesful and they thought the medical scare was over.  Soon after, the Lyons family followed God's call to move across the country to Arizona in the spring of 2013 to share their story of faith and help plant a church with some other families.  

July 28, 2013 things changed again.  Michael was admitted to St. Joe Hospital in Phoenix for 3 days after an acute onset of the "headache of his life".  Since then he has been in and out of Mayo Clinic having multiple MRIs, CTs, and tests.  Not a week goes by without at least 2 appointments!  Michael has now ALSO been officially diagnosed with Pseudotumor Cerebri, High Intracranial Pressure, Hydrocephalus, and Hyperadrenergic Autonomic Insufficiency; and most recently, suspected Chronic Traumatic Encephalopathy as a result of the countless head injuries he has suffered and the explosion he was in back in 2006.

Chronic Traumatic Encephalopathy is a progressive degenerative disease of the brain with no cure, and currently only symptomatic treatment.  Michael suffers with daily debilitating headaches caused by excess pressure on the brain because of the excess spinal fluid his body is producing.  He also suffers from , blurred vision, vision loss, tremors, difficulty with simple problem solving, inability to focus, difficulty with word finding, numbness in his hands and legs, poor hand coordination,irritability, atypical seizures, and poor balance among other issues.   Every day brings new challenges while doctors try to iron out how to best treat him without causing medication side effects or interactions.

Daily life for Michael has changed drastically!  The once workaholic man who loved spending time hiking the mountains with his family now has trouble with even the simplest of tasks like taking a shower.  Standing upright for more than 10 minutes causes his heartrate to climb and then it's followed by dizziness, blurred vision, and poor balance.  His seizures are coming more often, and are worse.  He had his first grand mal seizure in December of 2015.  Everything he does has to be planned in advance with plenty of time to take rest breaks to avoid a 911 call or hospitalziation.  

While health insurance covers a part of his medical costs, it does not cover it all and money is very tight.  Michael has been on unpaid medical leave since August of 2013.  He did not work in Arizona long enough to qualify for short term disability or paid any medical leave through his employer.  His first and second requests for SSDI disablity benefits were denied (which they were told is normal for the state of Arizona).  They are currently in the waiting game for a face to face hearing, but that process can take 12-18 months!   While they wait for financial assistance, the medical expenses of frequent appointments, tests, hospitalizations, etc. keep coming.  In addition to these already mounding medical bills,  the household expenses due to loss of income that they are facing day to day keep adding up making things quite difficult.

If you feel led to help with all of these mounding expenses, you can donate through this site.  Any funds received will be used to help Michael and his family with the travel costs and medical expenses for all appointments, copays, deductibles, other out of pocket medical expenses, day to day living expenses waiting on SSDI to be approved, and the debt incurred as a result of it all.  If you prefer to send a personal check or gift card, please click the "Contact the Organizer" button for an address to mail it to.

No matter the amount or gesture, it is all appreciated and blessed!