I’m posting this because a lot of people have asked how they can support Justice and my children.
I put a lot of thought into whether I was going to even do this. Mainly because I try my very best to be Mom and I work REALLY hard to ensure my kids have all their needs and wants without ever asking for help or even physical support. It’s a pride thing and I know that they are my responsibility and that responsibility is extremely important for ME to fulfill as a woman, mother, and human.
Justice will be 5 on March 17th!!! My little St. Patty’s Day full of luck and life baby
As many of you know, who have been following HIS journey…
Juju suffered a severe LIFE-altering unknown medical event on April 13th, 2025, shortly after his 4th birthday.
I lost my baby that day. It ultimately led to a heart monitoring implant being placed and he being diagnosed with a rare and undefined form of epilepsy. That’s a fancy term for “They don’t know” what type of epilepsy he actually has because his seizures “WERE” very far between (annual) and they caused cardiac arrest, which is far from normal in a normal case of any kind of epilepsy!! It also started last year as a silent type seizure with no warning signs or symptoms.
❌Justice did, at 2 years old, have a very similar event while walking in Penn Square Mall; however, at that time it was diagnosed as a febrile seizure because after the event his temp shot up to 106. He only stayed for a couple of hours in the ER and was sent home. I was told that every child is given 1 free seizure before a workup is warranted. I wasn’t happy because I lost my baby that day as well, and he had to be revived.
After JuJu’s long hospital stay in April 2025 and the surgery was done to place his cardiac device, extensive testing started between OU and Integris.
Justice has had 100’s of 1,000’s of $$$ (around $750k) in extensive cardiac and neurological genetic testing. I myself, and his father have gone through the same extensive genetic testing. I carry private insurance that I’m paying $1700 a month for out of pocket. I don’t qualify for Medicaid, so you can imagine the co-pays and medical payments I’m making monthly.
All the genetic studies are normal and unfounded in regards to his condition or any other conditions that he could be subject to in the future, for that matter. He has had every single test available in the US. We have also done lots of genetic counseling. To no avail.
Fast forward to December 13th, 2025. Justice has another seizure that was severe but did not require life-saving intervention. He was monitored for several days, stabilized, and sent home!
January 13, 2026 (Do you see where this is going to the DAY) He has another seizure at school, for the 1st time!! Then he gets to the and has a severe seizure in the triage! I lose my baby again and he has to be resuscitated and his heart restarted. They again, monitor him. He was severely postictal for 7/8 hours to the point they were concerned that he had gone into a coma. He then randomly woke up and said “Mama, I love you” in the sweet little voice he always does a million times a day around 11 pm that night. While I was sitting next to his bed, with my head between my knees pleading with God for another chance.
He was given a bridge , his daily were increased again and they sent him home.
The increase in his was causing some significant concerns, and he became almost unmanageable. This had happened before, where he was a danger to himself. So I knew it was time for a medication change. Which is very normal as a child grows and their chemistry changes. Especially, in regard to epilepsy.
February 13, 2026 (you see) I call the specialist after Justice had been suspended from BGC for the 2nd time in 1 week and I had gotten calls and messages every single day that week about his severe behavior. In correlation with his increase.
This wasn’t like Justice, everyone LOVES Justice!!! He lights up every room he walks in, he immediately changes your day and emotions as soon as you interact with him. He hugs and loves on everyone he meets, he doesn’t meet a stranger and is so incredibly caring and helpful!!! To know Justice, is to know true unconditional and immense love and gratitude!
February 23, 2026 Neuro calls me back, wants to bring him back down to his original dosage and wanted to see him March 12th. Ok cool
Later on in the SAME evening of 2/23 Justice has a seizure on the highway ️ while I’m driving!!! In 5 pm traffic. I pull to the shoulder, ensure his safety and get him stable and make a B line to the !
The was busting at the seams, both waiting rooms full, people lined up everywhere waiting outside to be seen. I asked them to please take my baby back to triage and place him on monitors because another seizure was around the corner!!! I could feel it, just like in January. He was just in an ODD postictal state. I KNOW my child!!
Within 2 MINUTES of walking in triage, Justice has A GRAND MAL SEIZURE!!! The 1st time this has ever happened! It was so visibly and emotionally terrifying that I literally lost everything in me in that moment. Screaming, frozen, I couldn’t assist like I always do and FIX IT! Nurses rushed in, scooped him up and started running with him through the halls of the ER until they got him to a crash cart. It took them about 5/6 minutes to revive him. As soon as he was revived, he had another follow-up seizure, much like the ones that are “normal” presenting for him.
He has never had an event last longer than 2 mins MAX.
❌This was an incredibly significant event and change in his status.❌
Again, same procedure: 3-day bridge and inpatient monitoring.
Currently we are at a crossroad ❌️. He has had full genetic , cardiac ♥️ and neurological brain workups from two different hospital networks. 4 separate teams. ⁉️There are NO answers! There is no other genetic testing or other testing available in Oklahoma, that he hasn’t already had!
The genetic test cannot be repeated for at least 4 to 5 more years to give or provide any NEW data . They are also waiting on further genetic testing, currently in development to be released so he can have it.
Justice could possibly benefit from a vagal nerve stimulator implant. It was approved by myself on 2/25/26. He has to have a repeat MRI this month to make a final determination. The criteria for that device placement is to 1st fail 5 medications, per his specialist. He is on his 4th right now!!!
I have had a staffing and completed the intake with The Mayo Hospital in Rochester, Minnesota. That campus specifically houses the team that Justice must see to establish a true diagnosis and proper preventative treatment or a solution to his medical condition. All of his doctors have sent the referrals and all his records to Mayo.
Now, the only thing holding us back is that due to our insurance provider being out of network: the Mayo requires a $5,000 cash deposit in advance, upfront to get scheduled. This is to guarantee payment for anything the insurance doesn’t pay.
There is also the cost of the trip there and back and lodging for the interim of us being there.
I have applied for a grant program directly through Mayo to see if I can get help with this.
I am not yet sure if Justice will be able to make the trip by plane ✈️ or if we will have to go by car . He has to have some type of evaluation to make that determination once the appointment is scheduled. I’m hoping I can get a definite answer on 3/12.
This is what we need HELP with. I need HELP with getting my child life-saving treatment so I do not lose him FOREVER.
I am faced with this every single day. I cannot eat, I cannot sleep, I am riddled with anxiety. I cannot take care of my own serious medical needs because I cannot leave his side. I cannot be away from him unless he is at school where there is an action plan. He cannot be out of my sight.
Justice deserves the world . He is so full of love and life.
I don’t think anyone understands his pain like I do, because I have lived it since 2013.
I just want to help my child.
If you would like to help Justice get medical treatment, I will list below how that can be done.
If you would like to help Justice have an amazing 5th birthday, he would also love that and I’m in the process of creating an Amazon wish list per request of several loved ones.
If you can provide just a prayer to my amazing warrior, I will be eternally grateful. Prayer is what has carried him thus far!!!!
If you could simply share my baby's fight and how much of a super warrior my son is, I would be forever ♾️ thankful!
I cannot express the love and gratitude that my baby, my older children, and myself have received in the last year!
We love you all
Please keep cheering my baby on!!!
