Don't grieve alone; 14,000 members and growing
Here is the story of my son, Matthew-
He was an easy baby, full of smiles and laughter but a rather shy little boy. He was so gentle natured. He grew up to be a wonderful person. He was well liked by his schoolmates and continued to be a nice, sweet person.
He wanted to be a 2nd grade teacher. He went to Community College, worked at PISD as a mentor and also worked part time at Tom Thumb.
When he turned 21, his life changed forever. He had been experiencing issues with drooling, tiredness, kept saying his mouth tasted like copper. He was beginning to show signs of what we thought was either a brain tumor or perhaps a stroke. His Dad took him for an MRI and he was diagnosed with Wilson's disease. This is a genetic disease that causes heavy metal poisoning of Copper. Apparently I have a recessive gene as well as his dad. No one on either side of our families have ever had this, that we know of.
With Wilson's disease, it's very rare so no Dr really knows that much about it, let alone how to care for someone who has it. The copper normally accumulates in the liver and most patients get a liver transplant and they are then good to go. Unfortunately for Matthew, it accumulated in his brain and caused massive neurological damage. He moved his entire body 24 hrs a day nonstop. His brain would not stop telling his body to move. He got down to 85 lbs at one point.
Over the next 10 years, he lost his ability to walk, talk, swallow, use his hands 100%. He was basically a prisoner in his own body.
He was in a Houston hospital for an entire year with Dr's trying to get his movements under control. His Dad and I took turns staying with him. We then had to move him to a nursing home where he lived out his final years. We were heartbroken to have to do that but he required 24 hr care. His chance of aspirating and dying were extremely high so we couldn't take a chance. Over the years, he went thru many surgeries to place a DBS in his brain and a baclofen pump in his abdomen.
His last 10 years of life were pure hell and yet he wanted to live. He never gave up and always had a smile on his face every time I came for a visit.
I used to pray to God that he would take him to heaven so he could be whole again. When this actually happened Aug 19, I was shocked and heartbroken. I miss him every minute of every day. I try to make this a somewhat positive thing because I know he is healthy, can run and talk and eat etc. But it's so hard to do.