JJ’s Journey Through Gotham

“Batman has no limits”- Bruce Wayne, The Dark Knight

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By Racine Guajardo

Bruce Wayne said it best, “Batman has no limits,” Just as Batman put no limits on himself, neither does Jeremiah (JJ)! Despite all the health obstacles that JJ has already been through, he continues to prevail as his favorite superhero Batman. Much like Batman had his sidekick; JJ is in hopes to get his very own Robin!

Mother of JJ, Nicole, noticed at about 12 months old when the switch from “formula” to food saying, “We noticed JJ would gag, smell his foods, refuse to eat certain textures,” and “ JJ was also not babbling or saying words, he made no eye contact which was different from his older siblings development.”

JJ’s family was encouraged to take him to Inland Regional Center where he received his first diagnosis of Sensory Processing Disorder (SPD).

According to Star Institute, “Sensory processing refers to the way the nervous system receives messages from the senses and turns them into appropriate motor and behavioral responses. Whether you are biting into a sandwich, riding a bicycle, or reading a book, your successful completion of the activity requires accurate processing of sensation.SPD exists when sensory signals are either not detected or don’t get organized into appropriate responses.”

At eleven months old is when Nicole initially started to see abnormal behavior but more intense as he got older stating, “Though we had “some” answers something wasn’t sitting right with me, JJ started becoming aggressive, he was still non verbal, he became self harming he would harm his sister and others, he was walking on his toes, refusing to eat, he wouldn’t interact with anyone,” said Nicole.

After reading and doing some research, Nicole felt that JJ had autism. After several doctor visits and asking questions, at two and half years old, JJ was officially diagnosed with Autism.

According to Autism Society, “Autism spectrum disorder (ASD) is a complex developmental disability; signs typically appear during early childhood and affect a person’s ability to communicate, and interact with others. Some of the behaviors associated with autism include delayed learning of language; difficulty making eye contact or holding a conversation; difficulty with executive functioning, which relates to reasoning and planning; narrow, intense interests; poor motor skills’ and sensory sensitivities.” The Autism Society provided a list of signs to look for in children: Lack of or delay in spoken language, Repetitive use of language and/or motor mannerisms (e.g., hand-flapping, twirling objects), Little or no eye contact, Lack of interest in peer relationships, Lack of spontaneous or make-believe play, and Persistent fixation on parts of objects.

After several months have passed, Nicole started noticing some more abnormal responses in JJ where he started to stare off. She proceeds to take him to more doctor appointments saying, “We see a Neurologist and have to go through an EEG and some blood work, where things come back normal but he’s still staring off a lot.”  After pushing for a five day hospital stay, Nicole and family find out these staring spells are now seizures saying, “He’s having them all day long, we have to have an MRI done which means he will be under general anesthesia, my poor baby is going to be knocked out! I was so scared but knew this had to be done, and once again nothing was found.”

A few days later JJ has a horrible reaction to a medication, where he is now having a status Epilepticus seizure which was a seizure that was longer than five minutes that  would continue for several hours.  he was taken by ambulance and the paramedics couldn’t stop his seizure by the time we got to the hospital he was still seizing and still unresponsive. They immediately gave him rescue meds which did nothing, once I demanded for that to be stopped he recovered however couldn’t walk, couldn’t talk.

Just when we thought we had all the answers we needed to help our child we were told JJ’s EEG at CHLA showed a rare, and catastrophic epilepsy called Lennox Gastaut Syndrome which is a hard to treat resistant to medication form of epilepsy.

According to the Epilepsy Foundation, Epilepsy is a brain disorder that causes seizures, which is a change in the normal brain activity. Seizures can last anywhere from a few seconds to several minutes. There are over 40 types of epilepsy with different causes and different types of seizures. About 300,000 American children under the age of 14 have epilepsy, it may be a lifelong challenge affecting many areas of life. Seizures in children have many causes. Common causes of childhood seizures or epilepsy included: fever, genetic causes, head injury, infections of the brain and its coverings, lack of oxygen to the brain, hydrocephalus (excess water in the brain cavities), disorders of brain development

JJ has failed five different medications; the family is currently discussing surgery, as well as the discussion every parent dreads with a child with epilepsy – sudden unexpected death in epilepsy (SUDEP).  When the seizures are not controlled, the person can have seizures during their sleep and the risk is extremely high.

However, JJ is soon to be four years old and is now verbal with speaking four to five word sentences, he has made four little friends that he knows by name, he is obsessed with superheroes especially Batman, he loves fruit snacks and now eats things he wouldn’t before, through his therapy and making small goals he’s achieving things people said he wouldn’t.

The family says, “Jeremiah has shown us amazing strength and has been fighting a courageous battle but as his family and seeing how hard it has been on him, we feel it’s best to get OUR hero his very own hero to help him through his good and bad days of this journey. Someone to help guide him and make his worst days not as bad.”

The family is hoping to raise enough money to get JJ a service dog that can help retrieve a phone, alert a caregiver, alert them to a seizure beforehand so they can get Jeremiah to safety, the dog will be able to apply deep pressure therapy to calm his anxiety, a dog can help from eloping is to just name a few benefits. Nicole expressed how thankful she is that her husband works hard enough to allow her to stay home with JJ however stated, “In order to get Jeremiah a service animal we would love to speed up the process and help fundraise with Little Angels service dogs.”

 

You may visit JJ’s Journey on Facebook, and if you wish to donate in helping JJ receive his very own hero, you can go to https://www.youcaring.com/jj-743830