Saturday, June 2, 2012, was a normal day for our family. The weather was sunny and warm, so we took the girls to the park to play. The ice cream truck came by, so we bought the girls an ice cream cone. My granddaughter Jenna, at six years old, could hardly hold her ice cream because her hands were shaking severely. We were frightened. Jenna spent the next four hours in the emergency room. Physicians ran blood work, consulted with a Pediatric Neurologist in Oklahoma City, and warned us of the symptoms of seizures for when she went home.
For the last year, Jenna(now seven years old) has been under the care of a Pediatric Neurologist, a Genetic Specialist, and an Ophthalmologist, all of whom are located in Tulsa, Oklahoma, which means Jenna and her mother travel to Tulsa for Jenna's medical appointments. Jenna has had multiple tests to include: brain MRIs, EKGs, Spinal Tap, EEGs, many blood tests, CT scans, abdominal CT scans, and two specialized eye examinations (for blurred vision episodes and daily headaches). Results of all tests done on Jenna have not given an answer as to why she is having these tremors.
Jenna’s hand/arm tremors continue every day; she has good days and bad days. Jenna is on three different types of medications, and she takes a total of seven pills a day. Since all the tests have not come up with an answer, we are trying to raise money for the next step in Jenna’s medical care. Jenna needs to have a full genetic workup. Our problem is that Jenna’s medical insurance will not cover the expense of this medical test.
UPDATE: July 26, 2013: Jenna had to get a new genetic specialist as the one she was seeing in Tulsa, Oklahoma, left the practice. She is now seeing a genetic specialist at OU Children's Hospital in Oklahoma City.
UPDATE: September 6, 2013: Jenna turned 8 years old. Happy Birthday Jenna!
UPDATE: October, 27, 2013: Jenna has been seeing a pediatric eye specialist in Tulsa for the past year. Jenna got reading glasses. She only needs to wear them when reading or writing.
UPDATE: November 23, 2013: Jenna has been seeing a local chiropractor, who uses the "activator" method, but we have seen no change in her tremors. Jenna saw her genetic doctor on November 8, 2013. She said Jenna is looking good, and Jenna had some blood drawn for some more mitochondrial testing. Jenna saw her neurologist on November 12, 2013, and she has been referred to a pediatric orthopaedic specialist in Tulsa regarding her spinal issues. Both genetic specialist and neurologist agreed that the next step is a full genetic workup.
UPDATE: March 28, 2014: Jenna had her blood drawn for exome Exome Sequencing. Results will take 16 weeks.
From our family to you, we are asking for help. No matter how little you can help, all help will be truly appreciated!
If you would like to contribute online, please click on "Give Now."
If you would like to make a donation to Jenna's fundraiser, but you do not have a PayPal account, or you do not want to make the donation online, please click on "Contact the Organizer" and send a private email to Jeannette(fundraiser organizer). All anonymous donations will be kept anonymous.