Personal Stories: Jennifer

My name is Jennifer Lindley.

When I was 10 moths old I got meningitis. It was by luck that the doctor that I had knew what he was looking at, because he had lost someone else to it. As I was living in the south west of western Australia. They had to race me up to PMH.

I was very sick for 2 weeks. It was at the end of the two weeks that I had a seizure, but I had nothing else until I was 2 year's old.

The doctors had me on different pills until I was 10.

When I was ten years old (1984) I was put into Tegretol, and was on until 2011 but I had been tired on Epilm.

My mum knew about an operation to control the seizures, but as I was still very young and my Brain was still growing, mum did not want to touch it in case something went wrong. She decided to wait until I was 21 to let me know, and then I could make the decision for myself.

By this time I was getting married and settling in to a job, so I decided to have a look into the operation and find out my options. As it turned out, I had a scar on my brain about the size of a grain of rice. They had to get me in for a week to find where it was coming from.

It took them four times of testing to pin point exactly where it was coming from. In February the next year they did the operation of L anterior temporal- lodectomy.

At the end of the year I asked my doctor if I could think about having kids. I had my first child 9 months later and then my second one just under 2 years later.

Superman Anthony

On Saturday, August 29th 2015, Anthony "Superman AJ" , suffered a seizure while bathing, he was rescued by his little brother and given CPR by mom until the arrival of City of Sunrise Fire Rescue. After resuscitation at the home, Aj was transported to Plantation General Hospital. His brain was deprived of oxygen for an unknown amount of time. Since the incident Anthony's body has shown that he will be able to live, however his brain function is showing the possibility of recovery. He is currently in whats called a Persistent Vegatitive State (Traditionally, a vegetative state that lasts > 1 mo is considered to be a persistent vegetative state. However, a diagnosis of persistent vegetative state does not imply permanent disability because in very rare cases (eg, after traumatic brain injury), patients can improve, reaching a minimally conscious state or a higher level of consciousness.) Which Anthony is trying and showing to prove!

We all know God is the ultimate healer so we will only speak LIFE into Aj! Anthony has a long road ahead of him for recovery. Currently he is in PICU, the long term recovery for Aj is unknown right now but we continue to have hope despite hearing that his brain damage is moderate to severe. Currently it looks that he will require full care for the rest of his life.
However the family is scheduled to bring him home within a few weeks!

All basic life skills need to be re-learned. From a medical professional stand point, most don't think it is possible for most of these things to be learned. from a mother stand point - HE CAN AND WILL DO IT!

He gets physical therapy now and will start occupational therapy and speech once he is home. The family wants to take him to a hyperbaric oxygen chamber facility for treatments. We have done the research and personally know others this has worked for. The amount of sessions he will need is undetermined but may be up to 40 or more, which is a arm and a leg! We want our Superman to recover! And he is trying so hard. The hyperbaric therapy will reactivate brain cells that have gone dormant. The recovery time for patients with brain injuries is four times faster than traditional therapies. The chamber delivers 100% oxygen to the blood and brain.

Anything that you are willing to help with would be extremely appreciated.

The outpour of love and prayers received by Anthony and his family cannot be put into words. For those who wish to continue to show support, this page has been created to help the family.

You can follow Superman Anthony updates on the Facebook page “Superman Anthony- Test of a Warrior

Personal Stories: Camille

I was diagnosed with idiopathic generalized epilepsy in May 2013. I was never involved in the community until I wrote a personal essay for Cosmopolitan magazine about what it's like to be a twentysomething woman living with the condition. It received an incredibly positive response, and I was able to interact with other young women who've shared the same qualms and fears. That was the first time I really felt part of a "community". I was welcomed with open arms, which was really heartwarming!

I decided to write an article about epilepsy because it's rarely spoken or written about. I wanted to share my experience for two reasons: I thought others in the same position would be able to relate and feel less isolated; and I wanted to shed light on the condition, since very few people know about its physical and emotional effects.

I consider myself to be extremely fortunate because I don't suffer from daily seizures. I have a good grip on my health because I follow the doctor's orders. I take my medication on a timely basis, limit my alcohol consumption and get my 8 hours of sleep. Every epileptic is different, so some may have to follow stricter guidelines. I'd say my number one tip is to be super conscious of how you're feeling and take necessary precautions to avoid potentially dangerous situations. For instance, when I'm exhausted, I don't drive. I'll stay home and rest. Another important tip: never take a bath when you're home alone. Wait until someone is around to check in on you. Better safe than sorry!

Read Camille's Cosmopolitan story here.

Personal Stories: Genny

Our daughter Genevieve (Genny) Barbour has intractable epilepsy and autism spectrum disorder. Her condition began with infantile spasms, which presented at 3 months of age. She is now 16 years old, and the only medicine which has ever controlled a single seizure is medical cannabis. Genny typically suffered from a tonic-clonic seizure daily or at least every other day. She regularly used rectal Dia-Stat to stop severe seizures, sometimes 15+ times per month. For the last 6 months, Genny's seizures have been controlled to typically one tonic-clonic every 5 days or so now.

Genny is now exploding with her ability to learn and her maladaptive behaviors have significantly decreased as well. We have been on The View with Whoopi Goldberg, and have appeared on numerous local New Broadcasts. Genny story has also been carried by People Magazine on-line; SJ News in print; Good HouseKeeping, and lots of internet stories.

We are involved in spreading information about epilepsy (and autism) and the wonderful effects that medical cannabis appears to have on both illnesses. Our journey really began, in November 2014, when Genny's Marijuana Doctor increased her dose of MMJ from 3 to 4 times per day, with one dose being administered at noon, with her daily lunch. Well, the private school for children with disabilities where Genny is placed, FREAKED OUT! No way were they allowing marijuana (a schedule (I) narcotic) on school grounds.

We have been in court since. I am both Genny's Dad, and her attorney. I represent both Genny and her Mom Lora (my spouse) in the New Jersey Office of Administrative Law, and the Federal District Court for New Jersey, regarding Genny's rights to take MMJ while at school, Lora's right to go to school and administer Genny's medicine, and Genny's right to have the school nurse administer her medicine, just like any other child, and with any other medicine.

If you go to and click on "perspectives" at the top, our story is on a video link. You can also see her story on her FaceBook page, Genny's Purple Ribbon Journey.

You can also support Genny at her account. This money is being used to pay for her legal costs. Even though I am an attorney, we have had well over $10,000.00 in miscellaneous costs, such as filing fees, paper, ink, copying, postage, binding of briefs, etc., etc., and paying staff.

Our efforts have resulted in Genny's school, the LARC school in Bellmawr, New Jersey, is the FIRST school in the nation to permit medical marijuana on school grounds. That was the direct result of a bill being passed in Genny's name, requiring that school's permit pupils with proper licenses to possess and use MMJ on school grounds, as an exemption and exception to the controlled dangerous substances act, and the No Drugs on School Grounds laws.

Roger Barbour

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