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Ryan's Recovery, Against All Odds

$28,995 of $50,000 goal

Raised by 252 people in 4 months
Created August 2, 2018
Ryan Mayer is one of the most humorous, kind-hearted, energetic, talented, and passionate individuals we have ever known. He radiates positivity, love, and kindness through everything he does. 

With all of his positive energy, many do not realize the struggles he has fought through for 26 years.

Ryan was born with multiple cavernous angioma’s on his brain.  A cavernous angioma is a blood vessel abnormality characterized by large, adjacent capillaries with little or no intervening brain. The blood flow through these vessels is slow. The disease occurs in 0.4 percent of the population, and 18.7 percent of these patients have multiple lesions (Ryan has 4). Individuals who have cavernous angiomas may suffer from headaches, seizures, and possible hemorrhages. For Ryan, his hemorrhages cause his seizures. 

 
Here’s a bit of history on Ryan.

When Ryan was 8 years old, he experienced his first grand mal seizure in the back of the car on the way to his best friends birthday party. It was the defining moment of a long fighting future for Ryan.

For those that don’t know, a grand mal seizure causes a loss of consciousness and violent muscle contractions. It's the type of seizure most people picture when they think about seizures.

Ryan was put on medication to control his grand mal seizures, but slowly they began to turn into focal seizures. For Ryan, we could tell he was having a focal seizure when he stopped what he was doing and just started to stare into space. He could be playing a basketball game and then all of a sudden every team member would be running to the other side of the court, and Ryan would be left on the other end, almost as if he was frozen in space.

Controlling the seizures became a priority. For two years, Ryan went for frequent neurological tests and was having his medication increased almost monthly until he ended up being on 14+ pills a day to control the seizures. With 14+ pills a day, the medication was no longer stopping the seizures.

That was when his neurologist in NJ  found a  wonderful and gifted neurosurgeon in NYC.  This surgeon has become our superman.  The neurosurgeon removed the first lesion in Ryan’s brain when he was just 10 years old.  Ryan fought hard and went on to life a productive life-

he became a talented musician, an avid hiker and runner, an uncle, a boyfriend, a supporter, a traveler, a dreamer, and a high achiever. With Ryan, when there is a will, there will always be a way.

His second angioma bled in 2013.  The same wonderful neurosurgeon in NYC preformed Ryan’s second brain surgery. 

Ryan fought hard once again and since that 2nd surgery, he’s continued to thrive. 

We’re here telling you this story, because Ryan’s third cavernous angioma has bled, but this time, it is different. 

Ryan had just finished taking a run in the Berkshires (4 miles barefoot) on Saturday, July 28, 2018 and went out with his girlfriend to get some pizza. Instead of getting that pizza, they ended up driving to the hospital.

From there, he was driven in an ambulance to Albany Medical Center.  He spent 4 days in the Albany Medical Center before being airlifted to New York Presbyterian (where his awesome neurosurgeon has taken him under his wing a  third time). 

Ryan is fighting, oh how he is fighting.  

Ryan currently has a breathing tube in, but he is initiating his own breaths (positive). He has paralysis on his left side, but some motor function on his right side (can give thumbs up and wiggle his toes), he can open his eyes a little bit and he can look up and down. 

What’s specifically different about this bleed compared to previous ones, is that this one is located in the brain stem (PONS). The brain stem relays information between the brain, cerebellum, and spinal cord. It controls eye movements, facial expressions, and regulates vital functions like breathing and blood pressure. 

It’s also an extremely difficult area of the brain to do surgery on. 

Ryan has made amazing progress these past few days, and he is fighting with every ounce of his being, but this is going to be a long road for Ryan. He’s looking at a few weeks in the hospital, with months of rehab and unfortunately, pretty heavy medical bills.

We are a family who do not always ask for help, and we definitely never ask anyone for money, but we all know that Ryan is going to accomplish AMAZING things in his life and we don’t want the progress he makes or the care he has to be limited because of finances.

Our whole family is prepared to restructure our lives to make sure that we are there for Ryan as much as humanly possible. 

 
Therefore, we have decided to set up a trust fund for Ryan. We are reaching out to the community around us to help us in whatever way they possibly can. If finances are rough right now and all you are able to do is pray or send best wishes, then we thank you immensely for that beautiful gift. For those of you who are able to donate, we also thank you tremendously for being part of Ryan’s recovery.  All of the finances will be put towards his medical bills, rehab, travel and living expenses, so immediate family can help him through this journey. Absolutely nothing will be pocked by the family for personal benefit. This is 3 out of 4 of the angiomas, therefore there is still a possibility that the 4th one will bleed. The surgeon will be looking for options to prevent this for happening, but that will also require some surgery if it bleeds.  Any leftover money will be saved in a fund for any future medical difficulties. 

 
We kindly thank you in advance. 

We stumbled upon this poem titled “Promise yourself” that perfectly describes Ryan’s beautiful soul.  

"Promise Yourself”

 
To be so strong that nothing
can disturb your peace of mind.
To talk health, happiness, and prosperity
to every person you meet.

To make all your friends feel
that there is something in them
To look at the sunny side of everything
and make your optimism come true.

To think only the best, to work only for the best,
and to expect only the best.
To be just as enthusiastic about the success of others
as you are about your own. 

To forget the mistakes of the past
and press on to the greater achievements of the future.
To wear a cheerful countenance at all times
and give every living creature you meet a smile. 

To give so much time to the improvement of yourself
that you have no time to criticize others.
To be too large for worry, too noble for anger, too strong for fear,
and too happy to permit the presence of trouble. 

To think well of yourself and to proclaim this fact to the world,
not in loud words but great deeds.
To live in faith that the whole world is on your side
so long as you are true to the best that is in you."  

— Christian D. Larson (Your Forces and How to Use Them)

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Just received word that Ryan will be transferred to sub-acute rehab at St. Johnland today on Long Island. This is a blessing as this facility seems amazing and only has 22 beds! What this also shows, is Ryan's continued progress, strength and will. We cannot thank all of the nurses, drs and staff at Rusk. They have been amazing and we are forever grateful.
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Hope everyone had a wonderful Thanksgiving. We are blessed and thankful for the incredible progress Ryan has been making. He never ceases to amaze us. The trach is out, Ryan is gaining strength and his voice is getting clearer. He pushes himself in rehab daily. We are approaching the next chapter in the journey...waiting for a bed at sub-acute rehab on Long Island. Everyone at NYU is wonderful and it will be an adjustment but Ryan is moving full steam forward on his recovery and this milestone reaffirms the progress Ryan has made against all odds. Thank you for the continued love, prayers, kind words, and generous support. xoxo
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Ryan is out of surgery and recovering. Dr. S said everything appears to have gone well. We'll know if the procedure worked in the next 24 hours. Please keep Ryan in your prayers that the procedure works. xoxoxo
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Ryan Update:
Ryan was transferred back to NY Presbyterian this past Tuesday. The latest cat scans have shown fluid building up which is causing hydrocephalus. Tomorrow Dr. S will perform a ETV procedure, which will allow the fluid to flow properly. Our hope is that this will alleviate his headaches and such to enable Ryan to continue to progress and improve in rehabilitation. Please pray that the procedure works.
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$28,995 of $50,000 goal

Raised by 252 people in 4 months
Created August 2, 2018
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