WESLEE'S WARRIORS

Glancing through this blog, you can see part of the horrible things my son, Weslee, has experienced.  Nearly 28 years old (going on 12 years old - it's the autism thing), he has had approximately 12 brain surgeries (some little, some massive), had a stroke ... followed by a short coma and the inability to walk, talk, hold a cup, etc.  He did well with OT and PT, getting much of his strength and body control back, but still walks with a cane, has double vision, limited eyesight, a shunt still in his brain, and more.

His first diagnosable seizure occurred in 2011. His first two brain surgeries happened in 2013.  He has been on many seizure medications, has been admitted to EMU wards in several hospitals and has a VNS (Vagus Nerve Stimulator) implanted in his chest (which doesn't really work).

We attempted a SEEG (Stereoelectroencephalography) which is basically an EEG but the leads are attached directly to the brain through tiny holes drilled, instead of being attached to the scalp.  The SEEG caused significant brain bleeding, a stroke and a coma.  After weeks of tests and I-hope-this-treatment-will-work actions, it was weeks before the consensus was reached that his brain bleed was caused by an extremely rare rare rare side effect of a seizure med he had been on for years. Any data would have been compromised from the brain swelling, so as soon as it was safe, the electrodes were taken out.  

He was in hospitals and inpatient occupational/physical therapy for about 6 weeks. Still, it took months for him to bounce back even close to what he was.

And he still had seizures. They still mutated. Meds still kind worked, until they didn't.  And we still have NO CLUE what causes his seizures, where exactly in the brain they start and finish, or how to help him.

Despite currently taking four seizure meds daily plus a rescue nasal spray, he still has many tiny seizures each day. He also has clusters of what he calls "medium" or "medium plus" seizures, including gelastic and tonic clonic. 

We are basically stuck at home... him more than me. He has broken his nose and otherwise hurt himself by having seizures with no warning.

That's why he has a SAFE SPACE ... his bed. Can't fall down the stairs or hit his head on the bathtub if he's on his bed.

But this has all become too much.  I'm in my 60s and my body is wearing out due to multiple health concerns of my own.  Weslee wants to travel the USA and meet people, make friends. Not be confined, or stuck with good ole Mom (that's me).

So...

He needs more brain surgeries, at the Cleveland Clinic soon.  I can't afford the trip up there, or the hotel, meals, gas, or incidentals, and my car broke down on the way back home the last time.  

Can you help?

Please ... be his warrior.  Give him back his life.  Please donate at:

 paypal.me/VIKKIWESLEELAWRENCE