I'm not sure how this is going to go or what the outcome will be, but I have faith.
10 years ago, I was blessed with a son... a son that came very early at 29 weeks. At two weeks old, while still in the NICU, Christopher contracted a staph infection. The infection got into his blood stream and traveled to his brain, causing Christopher to be put on life support for 14 days. During those 14 days, things didn't look promising. He was given little to no hope of survival. Never in my life had I felt so powerless. At that point, I called our family priest to come and baptize my son. It was a moment that many saw as the end, but for me, it was a moment that gave me faith. I knew then, my son was safe and that he was going to make it.
Sure enough, 10 years later, my sweet boy is still here! With many, many challenges both medically and financially, he's still here. Christopher's severe cerebral palsy has left him, deaf, blind, non verbal, and a spastic quadraplegic. He has severe Cervical Dystonia that causes the muscles in his face, neck, mouth, tongue and jaw to contract spontaneously, making it incredibly difficult to breathe. At times, the episodes become so severe that they impact his arms and legs, making it even harder to keep him safe, as these painful muscle contractions surge through his tired body.
Christopher was trached on January 9th of this year. We had exhausted all of his medication options to control the muscle contractions. His Dystonia had taken over and there was nothing else to do. I remember his doctor saying this to me, "either you trach him or he will die". The tracheostomy, though a last resort, has provided us with a patent airway so that when the Dystonia gets severe, we can at least put Chris on a ventilator so he can rest, while it helps him breathe.
Last month, my little boy celebrated his 10th birthday! I had alway promised him I would get him a lift van. Christopher is 77 pounds and is almost as tall as me. I have to carry him around (on my less than five foot frame) from his bed to the drive way, which is not only a physical toll on me, but very uncomfortable for him. He has limited muscle tone and is like a rag doll, so he easily falls over resulting in his trach touching the back of his throat. This often makes his gag, cough and cry.
We had a very old lift van , but we could never get the A.C. to work . The mechanic said it would almost cost me as much as the van to replace the A.C. I now have a little 1993 Villager van that is old, but thank God, it is ok for driving close to home. We are in need of a rear entry lift van. Christopher has no trunk support, so he easily falls over without the support of his 150lb custom wheelchair. This van would give him the space he needs so he can be safe and be reclined. This is the only way to protect Christopher's head and neck. It would be life changing for him, since he is very social and enjoys riding around and being out. As of right now, our only outings are to the doctors and to school.
The challenges are many, especially for a single mother, but I accept these challenges. I am my son's keeper.
Thank you so much for your support and generosity.
- Jeannie DeBoer
- Joyce Hein
- Wendy Holmberg
Organizer and beneficiary