Jones Family Medical Fund

Chiari Malformation

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Jones Family Medical Fund's Bio

Lauren and Corey Jones are residence of Walkersville, MD. They have a daughter (Jade) who is 12 years old, a son (Corey Jr.) who is 10 years old, and another son (Maxwell) who is 8 years old. Lauren and all three of their children have a very rare brain condition called Chiari Malformation. Mrs. Jones had brain and spine surgery nine moths ago, which wasn’t successful in alleviating any of her symptoms that she struggles with on a daily basis.

Chiari Malformation is where your brain is to big for your skull. The cerebellum part of the brain hangs out of the skull into the spinal column, crushing your spine, blocking the flow of the spinal fluid around the brain, and compresses the brain stem. There is no cure for Chiari but having the brain and spine surgery can help slow the progression of the symptoms.

As result of the blocked spinal fluid flow it causes high pressure on the brain and a syrinx ( syringomyelia) forms in the spine. A syrinx, or fluid filled cavity in the spinal cord eventually leads to paralysis if not addressed.

With Chiari malformation comes alot of other comorbid conditons and one of them is a retroflexed odontoid (RO). RO is where the odontoid bone is pushed back jabbing into the brainstem instead of being straight. Since the brain and brainstem controls the bodies functions it makes it impossible for someone with this condition to control normal body functions, heart rate…blood pressure ect. Ehlers Danlos Syndrome (EDS) is another condition that comes along with Chiari. EDS is a connective tissue disorder that has an effect on the entire body. Both of the Jones boys have heart conditions as a result of the poor connective tissue. One of the children has a hole in the side of their skull where their brain is ectopic which is called an encephalocele. The hole was caused from the pressure being to high around the brain that it wore a hole in the skull. The list of comorbid condition with chiari is a long one because your brain, heart and connective tissue control your entire body so you can imagine what this family is going through.

There are over 200 symptoms that come along with Chiari and the most debilitating one is the excruciating pain that is felt in the head. This condition prevents the children from living normal lives and they miss alot of school because of it. Chiari malformation is very hard for an adult to live with but it is a road that no child should have to go down. Corey and Lauren have worked very hard at getting their children to one of the only five Chiari specialist in the entire world who know how to treat chiari and related conditions. Having surgery done with a true specialist is one of the most important things a person with Chiari can do for themselves so their surgery comes out a success and everthing is addressed that needs to be. Lauren looks at her diagnosis and having brain/spine surgery as a blessing. Without ever knowing what was causing all her health issues and ultimately having her surgery fail, they would have never know what to check their children for. Now she is the best advocate for them because she lives it too and knows where to take their children to get proper treatment.

Please help this family come up with the money needed for medical bills and travel expenses to NY where their neurosurgeon is. Their appointment to come up with a plan of action for surgery for all three children is December 31st. Living on one income, having high deductibles and alot of medical expenses for four people has put this family into a financial hardship and they need help along with prayers ♡♡♡

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