I promise I usually don’t do this as we support so many nonprofits and causes who are fundraising, but this story really touched me so I wanted to share it with my BCG family. If you are able to support baby Zion please do, remember… Giving is Good.
The following information was submitted by Nikkita Smith, Zion’s mother.
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 jut 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 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 percent population.
We are scheduled to meet with Dr. Mark Souweidane, a specialist and one of the best surgeons in the field regarding Chiari Malformation, at Weill Cornell Medical College on July 10, 2014. He has graciously agreed to treat Zion. This latest brain surgery will be Zion’s second within a year.The surgery alone is $80,000. Weill Cornell Medical College has made arrangements for us to stay at the Ronald McDonald house in New York, NY. As parents we are charged with making sure our children get the best medical care in spite of our financial situations or location. Therefore, we will be traveling to New York from Arizona for our appointments.
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 (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. 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.
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