Help Everly & Arvie control their Seizures

My name is Sharon and I am fundraising for my beautiful grandchildren Everly and Arvie to get to Adelaide for Neurology appointments in hopes to diagnose and treat their seizures.

My daughter Tamara and son in law Ryan have had a tough year with their children's health as well as unexpected expenses having to travel to Adelaide for hospital stays and medical appointments. Ryan lost his full time employment and work vehicle in June requiring him to purchase another vehicle and work 7 days a week casual work, at a time when his children really needed him more at home. Tamara is the first to help anyone in need and donates to every worthy cause she can especially when it involves children and their health. Many people would know Ryan goes out of his way to help others but when it comes to asking for help neither of them reach out. Ryan has thankfully obtained full time work to support his family but he does not qualify for paid leave at this stage so any time he is required to take time off to care for the children or attend medical appointments the family have no income. The children have separate medical appointments at the Children's Hospital in Adelaide coming up over the next month which is at least a 7 hour drive from home for the family.

In May 2021, Everly who is now 3 years old, endured a full day of seizures ending in her unconscious, struggling to breathe and being flown from Port Lincoln to Adelaide with MedStar and admitted to the Children's Hospital for 5 days. Thankfully the last seizures happened at the Port Lincoln Hospital so that medical staff could assist Everly to breathe and administer medication to stop the seizures. Over the 5 days Everly was in hospital she was put on anti seizure medication and went through the process of resetting her brain after the trauma of 6 seizures in less than 8 hours. Everly had memory loss, she couldn't remember her pets or brother's names, her speech was slow and slurred, she had trouble chewing and eating solid food so reverted to drinking bottles, she had trouble with walking and balance and was an angry, upset, scared and confused little girl. Our family were concerned the seizures had changed our sweet, funny, smart and confident Everly. Over time and a change of medication Everly is almost back to her usual self however she is still experiencing episodes daily and has tonic clonic seizures about once a month leaving her sleepy, grumpy and regressing for days. Even after having an EEG and MRI there has been no explanation or diagnosis for the seizures. Tamara and Ryan monitor Everly 24/7 and up until recently when The Epilepsy Centre organised a seizure mat they had Everly sleeping with them to ensure she was ok during the night.

On the 1st of August, 3 months after Everly's first episode of seizures, her 1 year old little brother Arvie had a tonic clonic seizure. Arvie has had 3 seizures in the past month with no known cause so has been put on anti seizure medication. Arvie stops breathing, turns blue and regresses with each seizure. He is almost 18 months old and is more unstable on his feet now than when he first started walking, he constantly falls over and he is doesn't talk.

If anyone can help by donating no matter how small or share their story for awareness please know how grateful Tamara and Ryan are for anything anyone does for them and their children. Thank you to our friends and family who have already helped these beautiful babies to get the medical care they need, we appreciate it so much. The Epilepsy Centre provided Tamara with training on seizures and what to do in an emergency as well as organising a seizure mat for Everly. The Epilepsy Centre relies on members and fundraising from their lotteries and donations and receive no government funding. If Tamara and Ryan have any funds that aren't used for Everly and Arvie's medical expenses they will donate back to The Epilepsy Centre.