Media Contact: Jennifer Hardy May
My son Austin, who had been a totally normal baby up to this point, had his first seizure at four months old. What appeared at first to be a hyper-moro reflex turned into him having more than 12 episodes of his whole body jerking and his eyes open and staring in 12 hours, lead us to believe he was really having seizures. The following day an EEG was performed and indeed he was having seizures. We began mediation that for the next two months seemed to control his seizures and then the seizure pattern changed and he began having more of a tonic/clonic-generalized seizure. Most of Austin’s seizures happen when he is going to sleep, during sleep and upon waking up in the morning. Because of this he cannot sleep alone or he would try to get to someone and hurt himself, therefore he has to sleep with a member of our family at all times.
Since four months of age Austin has never been completely controlled and has been on approximately 10 different medications, including ACTH injections daily at nine months old for 30 days, even with all of these we have not been able to help him be completely seizure free. Many of these medications are given together in hopes of control. Currently, Austin takes three different seizure medications and recently had to weaning off of one due to the side effects that caused a severe tremor in his hands, much like that of a Parkinson’s patient, this tremor was preventing him from performing normal tasks such as feeding himself and getting dressed. Austin has had up to as many as 10-15 seizures in a day and currently is having anywhere from 1-8 per day. His seizures typically last around 30sec. to 3 minutes, causing total body shaking, eyes opening staring or eye fluttering, gurgling noises, and sometimes he tries to climb out of bed.
In 2001, Austin had a Vagus Nerve Stimulator (VNS) placed. The purpose of the VNS is to stimulate the brain counteracting the electrical impulses that the brain is giving off causing seizures and hoping to stop the seizure from either happening at all or decreasing the severity of the seizure. For Austin the VNS is on a setting called rapid cycle, which means that it is stimulating his brain for 25 seconds than off for 5 seconds than on again continually. The VNS also has the capability to increase the amplitude of the stimulation and stay on for one full minute if a seizure is seen by family, we do this by swiping across his chest with a high powered magnet where the VNS is located. Because, the VNS is ran by a battery it only lasts about 4-5 years requiring a replacement of the battery pack.
So far, Austin has had three surgeries just for his VNS since it was placed in 2001. Austin started showing development delays around the age of two and has continued to have delays throughout his life. He has speech, fine motor, and academic delays; he has been classified as Intellectually Disabled. He is 20 years old and academically functions at about a 4-5 year old and socially about a 12-14 year old. He also has a diagnosis of ADHD and Anxiety, both requiring medications. He also needs medications to help him sleep at night.
Even through all of this Austin is a fun, loving, energetic young man that is loved by all! His favorite thing to do is play his Xbox and he can play just about any game you give him. Austin also participates in special needs sports league and love to play baseball, basketball and soccer. He has lots of friends and it seems like anytime we are out he finds someone he knows. We are so proud of all the accomplishments he has had in his life and look forward to many more!
Jessica was born a beautiful child and developed normally and hit all milestones just like she should until she had her first seizure at 9 months old. Her second and third followed, and in the first year she had 8 seizures. We started her on medication as advised by the doctors, but the seizures continued. Each year the seizures increased in number and severity as well as developing differing types of seizures. By the age of 3 Jessica was no longer developing normally, but starting to decline in her cognitive abilities and the drugs she was on were making the seizures worse not better. She was having long status seizures and then being paralyzed after for hours or days. We took her to the Institutes for the Achievement of Human Potential in Philadelphia to try to reverse the brain damage and get a handle on her seizures. There we learned about cross-lateral patterning, and masking. The patterning helped with her coordination and the masking helped to keep the seizures shorter. but they continued.
At age 5 we took her to UCLA to see if she would be a surgical candidate, but were told the seizures were not localized to one place in the brain. She was on 6 seizure drugs at this time. The doctor’s didn’t know what to tell us as they couldn’t diagnose her with anything other than idiopathic/intractable Epilepsy. Basically that means we don’t know and can’t control it, so sorry. We tried many other non-traditional therapies, some of which helped a little, but most which didn’t help at all. She was eventually diagnosed at 7 1/2 years old with Dravet Syndrome. By this time she was having over 1200 seizures per year, sometimes as many as 30 per day. We travelled to Chicago to see the foremost specialist on Dravet Syndrome, Dr. Laux, and get advice as to what we should do for Jessie. She advised us as to the medications that seem to work the best and we worked to get Jessie on those three or four medications. Jessie has been on 17 anti-epileptic medications and the Ketogenic diet as well as many vitamins and supplements suggested by her doctors. She is now 14 still having daily seizures, although not as many, and functions at a 3 year old level.
Jessie loves to color and paint, do puzzles and matching games, bake cookies and brownies play at the park and watch videos. She loves her brother Matthew and her Grandpa. She has two golden retrievers named Shadow and Pillar and she loves to be with them as much as possible. They are very patient and gentle and allow her to lay all over them. Jessie loves her friends from school and always wants to go play at their houses. She is a pro at the iPad and can learn things on it we haven’t been able to teach her through traditional methods at school. We love having her in our family.
My 9 year old girl miss Hanna Maria was born normal. Then when we went in for her first set of immunizations shots and within 12 hours after getting them, she started having seizures. These started out just in the face but by the next night they were full body seizures (Tonic/Clonic).
Our local ER, that we went to that night, told us: ‘they are face twitches, everyone has these’.
I said: “What? I have never seen anyone with those.”
The next day, she was not any better so I took her to her regular Doctor and he told me same thing, adding what a seizure really would look like (full body). And sure enough, that night, she had the first full body seizure.
By the time we made it to see the Doc that specializes in this kind of stuff (at Primary Children’s Hospital) they said: yes, these are seizures and they are called ‘face seizures’.
At age 6 months, we were having 80 to 90 seizures a day. From age 1, they said she was Developmentally Delayed and by age 3 they said she had CP. At 3 1/2, we found out she also had Scoliosis. She had 2 rods put in her back at age 5. By 6, she got a Vagus Nerve Stimulator, to help with the seizures. With the VNS and 5 meds, we now have only 8 to 15 a day.
We where G-tube fed for awhile, and also had a GJ tube, but in the last year she can not do any kind of feeds, so we are on TPN through a central line.
No matter what life has thrown her way, she is a strong little girl and I would not change my life for anything. I love her so much for she is my whole world.
Jordan, Utah- March 28, 2014 – The Epilepsy Association of Utah, a 501(c)(3) charity, is
seeking a Treasurer to oversee the day-to-day financial operations of our
4 years proven track record of NPO financial oversight. The ideal candidate must
provide monthly reconciliation to the Board and oversee all aspects of the
financial health of the Association with no compensation. This position will
report directly to a Board of Directors and will also assist in creating and maintaining
the strategic vision of the organization.
the EAU’s finances.
of the Executive Board of the Epilepsy Association of Utah complete with voting
privileges. This is a volunteer position has a term of
the Association and present a monthly statement of finances to the Board of
- Serve as
Chair of the Finance and Audit Committee
second signer on all checks
- Create and
maintain policies related to the budget, audit, investment, financial controls
and fiscal management philosophies
- Lead the
Finance and Audit Committee in a review of any contracts for which the value is
greater than $5,000; the contract spans multiple years and has a value of more
than $5,000 per year; the contract has financial implications of more than
$5,000 and was not included in the annual budget
- Oversee, in
consultation with staff, the budget development and monitoring process
reports for the meetings of the Board of Directors on the status of the current
budget, investments and any financial issues requiring Board review and/or
other duties as assigned by the CEO/President or Board of Directors.
in the development and annual monitoring of the EAU’s strategic plan;
fiduciary responsibility for the fiscal health of the organization;
- Represent the
best interests of the organization on all issues raised in Board meetings,
based on careful analysis of agendas and supporting material;
- Know and
uphold the regulations, policies, and procedures of the organization;
- Represent the
EAU’s positions to individuals and groups with whom the Board member interacts
(e.g. open doors to potential donors, make visits, or identify key alliance
- Adhere to
conflict of interest policy of the EAU;
- Agree to the
terms established in the Board of Directors Contract;
- Recruit new
members for the organization.
in 1973, The Epilepsy Association of Utah is a 501(c)(3) charity dedicated to
enhancing the quality of life for all individuals living with Epilepsy and
seizure disorders. 1 in 26 people will develop Epilepsy at some time in their
lives leading to over 100,000 people in Utah alone. Epilepsy is the 4th
most common neurological disorder in the US after migraine, stroke and
Alzheimer’s. The Epilepsy Association of Utah offers a public education
program, statewide support groups, personal and professional advocacy, college
scholarships, art exhibits, educational conferences, summer camp and more. Visit http://epilepsyut.org
for additional information.
What an amazing year the Epilepsy Association of Utah has had! With Paint the State Purple 2014, we are relaunching our Seize: the Story series.
We have decided that it was only appropriate to start with a somber story; a story of one of our heroes, Charlee.
Charlee was born January 30, 2008 to Jeff and Catrina Nelson. She was a happy, fun loving, funny, sweet and smart 3 1/2 year old girl. She enjoyed singing, dancing, playing with her brother and sister and loved anyone to read her a hundred books a day. Little did they know the greatest trial of their lives would start on May 20, 2011, when she had her first seizure.
Following that, she had hundreds of tests including: EEG, 2 CT Scans, 3 MRI’s, Spinal tap, skin biopsy, ERG and countless blood tests to find her diagnosis. She had to endure so much pain and suffering but amazed everyone with her strength.
After 21 months of testing and searching for answers, the diagnosis came. Although it is NOT the results they had hoped for, we knew she had a greater mission on the other side. She had a genetic disease called Batten disease. It occurs when a child inherits two copies of the defective gene, one from each parent. Over time, affected children suffer mental impairment, worsening seizures and progressive loss of sight and motor skills. Eventually children with this disease become blind and bed ridden. They will be unable to walk and talk and the disease is always fatal. Charlee’s type of NCL is Late INfantile NCL/CLN2; it begins between the ages of 2 & 4. This form progresses rapidly and ends in death between 8 and 12.
Charlee had the opportunity to meet many members of the Utah state legislature and be one of the faces for cannabis oil legislation in Utah. On March 14, 2014, Charlee was called home; her mission was complete. Just 4 days before she passed, HB105 was officially called Charlee’s law. It may have been to late to help Charlee, but she helped many people to see the importance of having the option to use cannabis oil as a treatment for seizures.
The Nelson family is heart broken as they venture into the next journey in their lives but Charlee will never be forgotten by the Epilepsy Association of Utah and her willingness to help future generations here in Utah.