Giovanni. B

Giovanni battles Dravet Syndrome, a rare and severe form of Epilepsy.

After almost 2 years of praying for a baby, my husband and I were blessed with a perfectly healthy boy Giovanni.

On 11/11/2019 he went to the pediatrician for routine check up and vaccinations. He had a wonderful morning but later that day started seizing out of blue. At the hospital, the neurologist ran every test that took about 4 days. We were told that we must have not noticed that he had a fever and that resulted in this “one time” seizure. My husband and I had been convinced that Giovanni did not have a fever that day but they could not provide us another reason for the seizure and assured us that it shouldn’t happen again unless there is a fever.

Three weeks later, Giovanni started seizing again as he was getting ready for bed. At this point the neurologist diagnosed him with epilepsy and started medications. We asked what we needed to do if he had another seizure and the neurologist stated that it would be EXTREMELY rare for him to have a seizure on this medication. Fast forward a few weeks to Christmas Eve 2019, ANOTHER STRONG NON-FEBRILE SEIZURE! It was at that moment I knew we were dealing with something different.

Over the next few months I took Giovanni to four neurologists that tried different medications that did not work, had bad side effects and some even increased his seizure activity. We were in the ER every week with tonic clonic seizures increasing in duration to about 20-30 minutes long.

Not satisfied with the approach of these four neurologists, I found a fifth neurologist and it was then they sent him for a genetic panel and found he has a mutation of the SCN1A gene causing a sodium channelopathy. Finally we were sent to our 6th neurologist where he was formally diagnosed with Dravet Syndrome in January or 2020.

Unfortunately, this meant our perfect sweet boy will not only continue to have increasingly worse seizures but the literature also explains possible severe physiological and developmental delays and regressions with age.

Due to the high risk of SUDEP (Sudden Death Due to Epilepsy) and other contributing factors with Dravet Syndrome, life span is also not very high. With constant and continuing prayers and therapy Giovanni is now 2 years old and seems to not have current physiological issues. He does have many types of seizures and can have as many into the 100’s of them daily. This is currently affecting his ability to continue to develop speech and other skills. He has very little response to medications and continues to have prolonged seizures that can last as long as an hour.

He is scheduled for a VNS (Vagus Nerve Stimulator) implant surgery this November of 2021, in hopes that it will decrease that amount of seizures he is having daily.

We are so thankful to ALL at the Chasin A Dream Foundation, with their help, our family is no longer worried about being able to afford Giovanni’s current medications and rescue medications.

June 2022 update:

In November of 2021 Giovanni underwent surgery for a Vagus Nerve Stimulator (VNS) and it has truly changed Giovanni’s quality of life. Over the last 7 months, his seizure activity has decreased from about one hundred to about 1 or 2 visible and prolonged seizures a day. He is now able to enjoy limited indoor and outdoor activities, some of which he has never been able to do without triggering a major seizure before. The duration in seizures used to go as long as an hour and we are beyond excited to say they have not been longer than 10 minutes after the VNS was activated. As a result, Giovanni has not been hospitalized since before his surgery in November. Best of all, he has now began to make gains in development again. He still has a long road ahead and extensive therapy daily.

We are currently working daily with a team of therapist to address safety issues that are secondary to the seizures and medication side effects. Some days he trips and falls with every other step. He often tries to battle through his seizures and drops. Recently, he fell with a seizure and fractured his front tooth and it needed to be removed. We are currently trying to get as much safety equipment as possible to prevent injury as he continues to grow and develop.

The parents were recommended to get a Cubby Bed which can detect seizure activity while the child sleeps and also has a camera and audio installed. Previous to this, one of the parents had to be by Giovanni’s side 24/7. Per Giovanni’s mom “The bed has detected and alerted us with the camera and audio and alarm sensors to his seizures. Many of those seizures he was face down into the bed and our main worry is suffocation or other medical dangers. By having a way to see him and hear him and awoken by the alarm when we were all sleeping, we were able to get to him, open up his air way and administer rescue medications as quickly as possible and significantly reduce his risk of Sudden Unexpected Death Due to Epilepsy (SUDEP) which he is at risk for each day”.

Unfortunately the insurance company has denied their request to cover the bed as Not Medically Necessary and the family has petitioned them twice to no avail.

Chasin A Dream Foundation was able to provide this Cubby Bed for Giovanni.

Note from the family July, 2022:

We just received the check from Chasin A Dream Foundation and I am crying! We can’t thank you all enough. After fighting back and forth with our insurance, the foundation completely removed the burden of the cost for this bed that has continue to help with Giovanni’s seizures. We are beyond grateful!

Thank you,

Danitza, Jared, Giovanni, and Christian Bajer

Update January, 2023:

Giovanni is still having some good days and bad days unfortunately but he is always in great spirits. The medical bed you guys helped us with has been a godsend and has been helping out so much. Lately, he has been having increased seizure activity in his sleep and the video and audio sensor alarm helps us not miss any. It’s been a life saver for him! On Thursday he was at Joe DiMaggio for some testing.

Update March, 2023

Giovanni has had the VNS (vagus Nerve Stimulator) for about a year and 4 months. It’s on a pretty high setting and can still have as many as 10-15 breakthrough seizures daily. We have tried and failed 3 additional medications over the last year. On average he is having 1-3 breakthrough seizures daily which is a huge decrease from before the VNS which was 100s daily. Unfortunately, even with as little as 1-3 daily it’s still significantly impacting his quality of life. On Monday, he had 3 grand mal seizures back to back while sleeping and it had him knocked out and bed ridden for over 6 hours. He is still nonverbal so he can not communicate if he has an aura prior to a seizure and frequently has them while sleeping. Due to his frequent seizures and safety concerns, Palm Beach County could not provide or meet all required for medical necessity, so he was forced to change to hospital homebound schooling. He is attending an ABA therapy center and has been slowly improving developmentally. Having a dog that is trained in detecting seizures and possibly even trained to use the magnet for the VNS, that is the 1st line of emergency response, could significantly improve his ability to go to school and attend daily therapy’s and the potential for more independent daily activities such and using the restroom or taking a shower independently. Also, having a dog with the ability to alert when a seizure is in progress while sleeping or at any point in the day may help reduce injuries and reduce the change of SUDEP (sudden unexpected death in epilepsy) by alerting and making sure emergency responses are done immediately and without lapse in crucial time.

Update June, 2023 from Chasin A Dream Foundation:

We are thrilled to share the wonderful news that Giovanni has finally met his service dog, Gracie, today. This momentous occasion fills us with immense joy and excitement.

We are delighted to announce that Alpha Dog Training, located in Jupiter, FL, with the expertise of Carrie MonteLeon, will be responsible for training Gracie. Giovanni suffers from a severe seizure disorder that has greatly impacted his daily life, with seizures occurring relentlessly day and night. His ongoing battle requires his parents to be constantly by his side, ready to react and intervene. While we have previously provided a seizure-detecting device, it only offers a temporary solution. The introduction of a fully trained service dog, like Gracie, will be truly life-changing for Giovanni and his family.

Gracie's training will encompass more than just alerting and reacting to seizures. She will also serve as a loyal companion and act as a buffer during these episodes. Seizure-detecting dogs have the remarkable ability to continuously lick a child's face during a seizure, stimulating their breathing. They will also alert the family and position themselves on the child to ensure their safety. The incredible capabilities of a service dog for a child with seizures are truly remarkable.

We invite you to stay updated on Giovanni's journey, as well as the journeys of other children who have received service dogs through our foundation. Please follow our page and visit our website for regular updates. Your support and generosity through donations to the Chasin A Dream Foundation have made this possible, and we extend our heartfelt thanks to everyone involved.

Thank you once again for your continued support. Together, we are making a difference in the lives of children like Giovanni.

Chasin A Dream's warrior, Giovanni, is engaged in a battle against Dravet Syndrome, an uncommon and severe variant of Epilepsy. Recently, we facilitated the contribution of a service dog named Gracie, who is presently undergoing training supervised by Alpha Dog Training located in Jupiter, Florida.

The training regimen is extensive and demanding. Among the various skills being cultivated in Gracie, one remarkable aspect involves her inclination to instinctively lick Giovanni's face during his seizure episodes, a gesture intended to stimulate his breathing. Gracie's innate response in this regard is already demonstrating her exceptional intelligence and profound connection, as she grasps her purpose of safeguarding the young boy in times of crisis. I am utterly amazed and profoundly elated by this development.

Undoubtedly, the acquisition of a service dog constitutes a significant undertaking, and our ability to deliver such personalized support is entirely attributable to the generosity of our exceptional community.

Lori Griffith,

Executive Director

Update October 11, 2023:

Giovanni continues to make developmental gains with consistent therapy. About 2 years with the VNS (Vagal Nerve Stimulator) his seizures are still as frequent as 2-3 times a day but have periods of 3-5 days of seizure freedom allowing for those developmental gains to be made. His seizures have decreased in duration to under 10 minutes. As a result, he has not been hospitalized for seizures for almost an entire year. He is currently learning how to use an AAC (Augmentative and Alternative Communication) device as he remains non-verbal. He is successfully requesting people and (Gracie), drinks, food, and identifying objects.

Gracie is now 9 months old and has now been a part of our family for 3 months. With the help from Carrie Ann Monteleon at Alpha Dog Training, Gracie continues to improve with response before, during and after Giovanni's seizures. She now jumps into action when seizure begin by licking face/head/hands to stimulate him back to consciousness. This week she even warned us a seizure was going to happen. After laying Giovanni in bed to sleep, she refused to leave his side by posting up by his bed and would not budge. I was confused by her actions as she had not demonstrated this behavior before, and called the trainer. Carrie advised me to stay close to Giovanni as this could be her way of communicating that he is about to have a seizure. Sure enough, while on the phone with Carrie, standing next to Giovanni and Gracie, he began convulsing in his sleep. Gracie and I were able to respond immediately at the onset of his seizure and stopped it quickly. I'm so grateful she is now a part of our family and is already essential in providing life saving measures for Giovanni.