Alexis' Surgery-Chiari Malformation
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The Kitchen Family needs your help! In June of 2016, at age 4, Alexis (Lexi) was diagnosed with Chirai Malformation Type 1, CM1. CM1 occurs when you have a small or misshaped skull. This causes the skull to put pressure on the brain, forcing it downward and into the spinal canal. Lexi likes to say, “I am so smart and my brain is so big that it is coming out of my head!” As cute as she is when she says this, the structural defect can block the flow of cerebrospinal fluid that cushions the brain and the spinal cord is a serious issue. CM1 develops as the skull and brain grow and symptoms do not usually develop until the patient is an adolescent or adult, unlike Lexi’s case. Another problem that Lexi has is that her brain is not only herniating downward, but also AROUND the spinal column inside the skull. This is placing pressure on her autonomic nerves causing tremors, circulation lost to her extremities and a few other symptoms.
As experts in the treatment of Pediatric Chiari are not common*, we traveled to NYC in August of 2016 to seek medical advice. He stated that based off her MRI she would certainly need surgery. However based on the severity of her symptoms at that time, we could probably hold off a little longer. Now at age 5, Lexi’s symptoms have continued to progress. The tremors are now causing her to have difficulty writing, playing with small objects and she is now having headaches. These symptoms are not allowing her to have the carefree life of most 5 year olds. The Neurosurgeon now believes that we are at a point where we have to turn to surgery to try to stop or slow those symptoms.
On May 22, 2017 Lexi will undergo a Complete Brain Decompression surgery. The Neurosurgeon will remove a small piece of her skull and open the dura (the membrane around the brain) in an attempt to relieve the pressure on the brain. We will have to travel to NYC and spend about 15 days there while she recovers enough to fly home. There are not many choices for hotels in the vicinity of the hospital and the cost is $313+ per night. We appreciate your consideration in donating so that we can focus on our little girl and her recovery.
As experts in the treatment of Pediatric Chiari are not common*, we traveled to NYC in August of 2016 to seek medical advice. He stated that based off her MRI she would certainly need surgery. However based on the severity of her symptoms at that time, we could probably hold off a little longer. Now at age 5, Lexi’s symptoms have continued to progress. The tremors are now causing her to have difficulty writing, playing with small objects and she is now having headaches. These symptoms are not allowing her to have the carefree life of most 5 year olds. The Neurosurgeon now believes that we are at a point where we have to turn to surgery to try to stop or slow those symptoms.
On May 22, 2017 Lexi will undergo a Complete Brain Decompression surgery. The Neurosurgeon will remove a small piece of her skull and open the dura (the membrane around the brain) in an attempt to relieve the pressure on the brain. We will have to travel to NYC and spend about 15 days there while she recovers enough to fly home. There are not many choices for hotels in the vicinity of the hospital and the cost is $313+ per night. We appreciate your consideration in donating so that we can focus on our little girl and her recovery.
Organizer
Erica Kitchen
Organizer
Pearl River, LA