After two days of being in pain a few months ago, our son told me that he needed to see a doctor because his stomach hurt intensely. Our wonderful family physician sent us for some further testing, just to make sure it was not appendicitis, and to help him feel better. Little did we know that this would be the beginning of an intense medical journey, which would also come to involve our youngest child as well. Isaac has been diagnosed with Chiari Malformation type 1, and is in the process of learning more about the possibility of tethered cord syndrome. Chiari Malformation Type I (CM) is a neurological disorder where part of the brain, the cerebellum (or more specifically the cerebellar tonsils), descends out of the skull into the spinal area. This results in compression of parts of the brain and spinal cord, and disrupts the normal flow of cerebrospinal fluid (a clear fluid which bathes the brain and spinal cord). Along with this, we learned Isaac has hypothyroidism, as well as something going on with his GI system. On top of everything else, he deals with headaches and forgetfulness. Not a week goes by where he does not have some kind of specialist appointment, as well as weekly therapy appointments, and it is taking a toll on our finances. Annie, who was already in various therapies for autism spectrum issues, was also just diagnosed with Chiari Malformation I. However, her situation is more dire, as her cerebellum is tightly adhered to her spinal column, and she also has a sizable syrinx (a fluid-filled cavity in the brain stem or spinal column). While Isaacs issues may not require surgery right now, Annie will need surgery for sure, and the testing process has started. The surgery is a serious one, and involves opening up the skull. Here is a picture of another person with the condition post-surgery: lmtorbust/wp-content/uploads/2010/08/jess-surgery.jpg . If you’d like to know more about the surgery, this is a good site:mayfieldchiaricenter/chiari_surgery.php The sticky wicket in all of this is that we are currently in debt remediation. We have been able to keep current on our present bills, but this double-whammy threatens our entire family’s stability and our home if we cannot keep current. We are asking family, friends and friends-of-friends to help us meet the unexpected medical expenses. We are deeply grateful to anyone who is able to help. Our website will have updates and such, as well as other ways folks can help. - See more at: youcaring/medical-fundraiser/upton-family-aid-brain-spine-surgery/199954#sthash.dBZwJM2V.dpuf Kim Upton
Posted on: Wed, 09 Jul 2014 03:54:15 +0000
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