A few years ago our son Sebastian got diagnosed with having Arnold Chiari Type 1 a disease where the brain is misformed and it's closing off the spinal fluid to the brain. They performed brain surgery on the young non-verbal Sebastian. It was gut renching an horrible experience that know child or parent should have to deal with.
Fast forward and about 6 weeks ago Mette (Mom) started getting leg pains, numbness in limbs and loss of energy. MRI's showed that Mette's brain was just like Sebastian's and it was cutting off her fluid to the brain, but Mette's was almost double in size (16mm) and it actually caused a syrnynx (cyst) in her spine. The feelings of pain in her legs was her slowly becoming paralyzed or worse if she didn't have brain surgery immediatley.
Two weeks ago Mette bravely went into Brain Surgery to cut the lower portion of her brain away to allow the spinal fluid to flow properly. We were all nervous and waiting optimistically that she would wake up feeling better. But when she slowly awakened, she realized that she can't move her eyes, and suddenly she knows something went wrong... The neurologists does an MRI only to find out that she had a stroke during the surgery, and it was in the area of the brain that controls the eye's. Mette has remained positive thru all of this and she's working hard at getting better for her boys.
Mette has atleast a year or so of rehab and our son has a lifetime of care at home that she won't always be able to handle now. Also, she can't drive until her eyes come back... We want to help cover costs for eye therapy, OT therapy, PT therapy, and possibly eye surgery in future.
In addition, she has always wanted a special needs therapy/play room for Sebastian and now she will need to do home therapy also. Maybe we can help make her dream a reality and build a therapy room in the garage or in the back of the house that they can both use...
*Special thanks to her friends Danielle and Paula for spending the night with her in the hospital in ICU for countless hours and for just being the awesome friends that you are for her. Also thanks to Sarah for putting together the food calendar for me(husband) and the boys. And thanks to all the friends and neighbors for sending us food, helping out with the boys, and for all the prayers and thanks to my awesome cousin Nancy who has helped watch Sebastian and even got him to go to bed without me there.
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- Walter Ocon
- Kim Ashby
- Lisa Bates
- Jason, Sebastian, & Jason Jr.
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