Zion's Journey
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Zion’s Journey
Zion began her medical journey on August 31, 2012. The doctors’ diagnosed her birth as a child with Cutis Marmorata Telangiectasia Congenital and Congenital Asymmetry of the arms, which means her Right arm is smaller than her left. Zion is a happy child and this medical challenge did not seem to affect her spirit. Yet something was still amiss as she was not meeting her developmental milestones.
The journey continued on February 21, 2013 when Zion was diagnosed with Chiari Malformation Type 1 (a brain abnormality that causes the cerebellum, the part of the brain that controls coordination and muscle movement, to adjust into the space normally used by the spinal cord, causing pressure on the brain stem and fluid on the brain), and developmental delays. We received her last diagnoses, Right Hemiparetic Cerebral Palsy, on May 1, 2013. The doctors originally gave a good prognosis regarding her Chiari Malformation. They thought they could remove some fluid, relieve pressure on the back of the skull so the brain would be able to grow normally. This procedure is successful on 99% of the patients. On August 09, 2013 Zion had her first brain surgery due the Chiari Malformation. The surgery was successful and Zion was on the road to recovery, so we thought.
Unfortunately, after six months of relief Zion began to experience headaches, and a trip to the doctor for more tests revealed the cause: the Chiari Malformation returned. Though the procedure is successful for 99% of the people receiving this complicated surgery, there is one percent (1%) of the children who must repeatedly have the surgery as they grow. Zion is in that one
Zion’s Journey Page has been created so you can come with her, and be an encouragement to her as she moves through her quest to gain full recovery from Chiari Malformation and a have good quality of life.
I’m asking if your heart is compelled to help Zion get the best medical care that she needs, please feel free to make a donation. I have provided, for those who are interested in learning more about Chiari Malformation more information below.
Chiari Malformation is:
Chiari (pronounced key-are-ee) malformation is a brain abnormality that causes the cerebellum, the part of the brain that controls coordination and muscle movement, to protrude into the space normally occupied by the spinal cord. Some children are born with the condition, and others develop it as they grow.
Chiari malformation sometimes happens because the space at the back of the skull, where the cerebellum sits above the spine, is too small or is unusually shaped. These "cramped quarters" squeeze the cerebellum and even part of the brain stem, which controls the nerves in the face and neck, down through the foramen magnum (a funnel-like hole below the skull through which only the spinal cord usually passes).
Chiari malformation is also sometimes called tonsillar herniation or tonsillar ectopia because the part of the cerebellum that descends into the foramen magnum is called the cerebellar tonsils.
The pressure caused by Chiari malformation on the cerebellum, brain stem, and spinal cord can keep them from working correctly. It can also block the movement of cerebrospinal fluid (CSF), the liquid that surrounds the brain and spinal cord and protects them from injury. When CSF doesn't flow properly, it can build up in the brain and spinal cord and block communication of the brain's messages to the body.
(http://kidshealth.org/parent/medical/brain/chiari.html#)
Zion began her medical journey on August 31, 2012. The doctors’ diagnosed her birth as a child with Cutis Marmorata Telangiectasia Congenital and Congenital Asymmetry of the arms, which means her Right arm is smaller than her left. Zion is a happy child and this medical challenge did not seem to affect her spirit. Yet something was still amiss as she was not meeting her developmental milestones.
The journey continued on February 21, 2013 when Zion was diagnosed with Chiari Malformation Type 1 (a brain abnormality that causes the cerebellum, the part of the brain that controls coordination and muscle movement, to adjust into the space normally used by the spinal cord, causing pressure on the brain stem and fluid on the brain), and developmental delays. We received her last diagnoses, Right Hemiparetic Cerebral Palsy, on May 1, 2013. The doctors originally gave a good prognosis regarding her Chiari Malformation. They thought they could remove some fluid, relieve pressure on the back of the skull so the brain would be able to grow normally. This procedure is successful on 99% of the patients. On August 09, 2013 Zion had her first brain surgery due the Chiari Malformation. The surgery was successful and Zion was on the road to recovery, so we thought.
Unfortunately, after six months of relief Zion began to experience headaches, and a trip to the doctor for more tests revealed the cause: the Chiari Malformation returned. Though the procedure is successful for 99% of the people receiving this complicated surgery, there is one percent (1%) of the children who must repeatedly have the surgery as they grow. Zion is in that one
Zion’s Journey Page has been created so you can come with her, and be an encouragement to her as she moves through her quest to gain full recovery from Chiari Malformation and a have good quality of life.
I’m asking if your heart is compelled to help Zion get the best medical care that she needs, please feel free to make a donation. I have provided, for those who are interested in learning more about Chiari Malformation more information below.
Chiari Malformation is:
Chiari (pronounced key-are-ee) malformation is a brain abnormality that causes the cerebellum, the part of the brain that controls coordination and muscle movement, to protrude into the space normally occupied by the spinal cord. Some children are born with the condition, and others develop it as they grow.
Chiari malformation sometimes happens because the space at the back of the skull, where the cerebellum sits above the spine, is too small or is unusually shaped. These "cramped quarters" squeeze the cerebellum and even part of the brain stem, which controls the nerves in the face and neck, down through the foramen magnum (a funnel-like hole below the skull through which only the spinal cord usually passes).
Chiari malformation is also sometimes called tonsillar herniation or tonsillar ectopia because the part of the cerebellum that descends into the foramen magnum is called the cerebellar tonsils.
The pressure caused by Chiari malformation on the cerebellum, brain stem, and spinal cord can keep them from working correctly. It can also block the movement of cerebrospinal fluid (CSF), the liquid that surrounds the brain and spinal cord and protects them from injury. When CSF doesn't flow properly, it can build up in the brain and spinal cord and block communication of the brain's messages to the body.
(http://kidshealth.org/parent/medical/brain/chiari.html#)
Organizer
Nikkita Smith Dennis
Organizer
Phoenix, AZ
