When I talk about Daniel I tend to get wordy. So, if get bored, you can skip to the last line of this message and it pretty much will sum it up. Daniel was your typical baby "“ until around six months old. Daniel was diagnosed with a rare and incurable neurological disorder called Congenital Bilateral Perisylvian Syndrome and a catastrophic form of epilepsy. In layman's terms, Daniel's brain did not develop properly.
At the time of this diagnosis, there were only approximately 60 cases in the US. At 2 years old he was given the label 'Spastic Quad Cerebral Palsy'. At 8 years old, Daniel is unable to walk, talk, use his hands properly or eat unassisted. It is impossible to know whether or not, or to what extent, he will be able to do any of these things. An additional unfortunate statistic is that individuals diagnosed with CBPS typically display mild to severe mental retardation and severe epilepsy. Daniel is fortunate as his receptive language is spot on. He can understand anything you say to him and he is a little sponge for knowledge.
Daniel has had his fair share of procedures and surgeries that an 8 yr old should not have to experience. He will continue having these for the rest of his life and he handles all of them like a trooper. Unfortunately, he is a little boy that is trapped inside a body that isn't working for him. His CBPS affects the speech/motor area of his brain. It won't let him call me "momma", talk with his sisters, hold his toys or throw a baseball around with his dad. It stops him from having the typical experiences that a little boy would have. Daniel does not let this get him down. He is always smiling and lighting up the room.
When he was first diagnosed we were devastated. We were told not to expect much for him. We were certainly not prepared for the challenges that we are faced with today. Even though we cannot reverse the damage that has already occurred, we are convinced that we can maximize his quality of living. Our confidence is so strong that we take him to physical, occupational and speech therapy Monday through Friday along with his schooling. He is in a general education 2nd grade classroom.
Currently, our lives are consumed with doing everything in our power to help our son reach his full potential. Please don't read that wrong. When I say 'consumed', don't take that negatively "“ He is the world to us and we are consumed by choice. I would seriously give my life if it would help him. So, after going through some stages of grief on the diagnosis, we decided that Daniel did not ask to be born this way "“ and damn it, he is going to live his life to his fullest potential. So, we search for things he can do. He plays baseball with The Miracle League of Michigan (Southfield). He also is on a bowling team, does horseback riding, tree climbing and anything else we can modify for him. He recently ran in a full marathon with a group of wonderful people in Grand Rapids called myTEAM TRIUMPH and placed 1st with a time around 3 ½ hrs. He will be running again next summer and will hopefully compete in a triathlon. Daniel is a complete joy to have in our lives and he has made this entire family a better group of people.
We were fortunate enough to be introduced to a group of people from Michigan called the Michigan Chivers. If you are not familiar with The Chive, it's a group with multiple personalities. One of them is called Chive Charities and the Chive Nation and it is powerful and life-changing. When someone who is new to both asks what the deal is, it is often hard to explain it in a few sentences, but a quote that is often used is this -
"the most caring group of misfits the internet has ever seen."
It is a group of people that play hard and have an amazing ability to assemble and "make the world 10% happier" through a staggering level of giving. If you were curious how the Chive Charities came to be, and subsequently the Chive Nation and their charity works across the country, watch this video and have some Kleenex handy - https://www.youtube.com/watch?v=zgHKT0rWnSI
Also, you can get some sweet Michigan Chivers gear here: http://michiganchivers.storenvy.com/
Any funds raised could go to a variety of things he needs. A down payment on a wheelchair adaptive van, a therapy pool, a new device that allows him to go on the computer only using his eyes, a special needs bike or renovating our tri-level home to have his bedroom on the main floor with a bathroom he can use.
We don't need to worry about teaching Daniel about life:..Daniel teaches us. THIS IS DANIEL.
- Michigan Chive
- Kristi Donaldson
- Simon Law
- Tim Hart
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