Hope For Jackson

$3,827 of $10,027 goal

Raised by 57 people in 12 months
Created May 21, 2018

Thank you for coming here. We need your help, urgently. Stand with Jackson, just six years old, as he fights for his life.

Hi Everyone,

I am Jackson James Lewis Souza’s mommy, Rayna Bell. As the single mom of a terminally ill, special needs child, I thought that it was important that I write a message so that you could fully understand the gravity of the situation and what life now looks like from Jacksons, mine, as well as my family’s perspective.

For those of you whom are either: family and / or friends, the family that we choose, please accept my apologies for not having the ability to have kept you all properly updated.

Jackson has had a long journey in his six years on this earth. It started when he was diagnosed at 4 months old with Tuberous Sclerosis Complex, Type II (which is a terminal rare genetic disorder, with no cure); which has now resulted in him also being an Epilepsy & Autism warrior. When I say warrior, Jackson has far exceeded the definition, and has done so since the day he was born. He’s a fighter He must get that from his mama. ☺️ He is my only child, and my whole entire heart.

We've enjoyed almost two years of what would be “semi normal” for a child in his situation, but knew that period was abnormal, and we've savored every precious moment of it! We knew that if something major did happen, we would conquer it all together: with his true warrior strength, and my mommy superhero love and advocacy; backed by our amazing family & friends, and with as much composure as humanly possible in these types of very scary situations. 

On February 20th, 2018, an intense roller coaster started and has continued for over 4 months now at this point. He has now had 5 separate hospital admissions with only a few days to about a week between admittances. The worst part of this journey is that before that day, my Jackson was the happiest kid you’ve ever met from literal sun up to sun down. Now there are only minute glimpses of the son I once knew; and it breaks my heart every single day that this roller coaster has continued. It seems like all the doctor's did was to continually neglect him, leave him having excruciating pain attacks, ignore all of the obvious neurological symptoms, try to place band-aids, refusing to do proper testing for a kid who has a terminal rare genetic disorder, epilepsy and autism. once we basically demanded to speak to the head of pediatrics, brought advocates from Alta Regional Center, and started questioning the millions of dollars they’ve all been paid over the course of those 5 inpatient stays, they finally agreed to do sufficient testing. A sedated brain & stomach mri, CT scan, and colonoscopy & endoscopy. The results came back and there are 3 brand new brain tumors, just in his cerebellum, that were non-existent 6 months prior, to them growing at a rapid rate to take up at least 65% of his cerebellum. The cerebellum is responsible for alot of things; to include: pain, behaviors, balance, and much more. Basically, all of his symptoms are a direct result of those new brain tumors. Once the hospital saw what they missed, and that it was their fault that they didn’t address his pain, symptoms and that they had completely diminished his mental state; they added in an antipsychotic for good measure, and discharged us a few days later to cut their losses, to avoid liability & changed his proven pain attacks to state that these attacks are now solely and completely behavioral. But that was a lie. It's too late for them to cut their losses; someone is going to pay for what they did to my sweet boy!
UC Davis has STOLEN my child's mental, physical, emotional and psychological well-being, and, most importantly, his happiness! His, as well as mine and my family’s, quality of life has been completely shattered. While this fundraiser can't help us regain our previous life, I am hoping that this fundraiser can help us gain some essential immediate needs and services.

He needs so much right now, both medically and financially. After being discharged the 5th time, we got discharged to an amazing new pediatrician that specializes in complex cases like Jackson’s. She is a complete god send. But unfortunately, after meeting with her last month and after her taking a close look at all his tests and scans, she gave us the devastating news that jacks can pass away anytime from soon (in the immediate sense) to a few years max. But she was clear with me that it’s going to be sooner than later, as there’s only so much space in his brain. His brain is inundated with over 100 of the small tumors (which are the size and shape of little screws) and 4 of the large tumors as well. That also doesn’t include the tumors he also has in his heart and kidneys. We are doing our best to hold it all together, but any of you who are parents will understand what it could feel like to be told your precious 6 year old boy is going to pass away. It’s devastating beyond words. Below goes into more detail of our hospital stays and the steps that got us here. So, if you’d like to read on, please do so
It began when Jacks had been sick for several weeks, which his pediatrician thought was stomach virus. However, he was projectile vomiting and a fever of 104.9*F, which was rising quickly. I took him to the Sutter Roseville Emergency Room and we were there for hours upon hours to be seen. After initially fighting us and saying that they wouldn't, the attending finally agreed to transfer us to his home hospital, UC Davis. 

We stayed at UC Davis for two days just to stabilize him. However, it was only at my insistence that they actually ran a virus panel besides the flu panel and discovered that he had Respiratory syncytial virus (RSV). RSV can have serious, even deadly, consequences in kids like Jacks who have no real immune system! We were discharged the next day, but within 48 hours, Jacks was showing odd symptoms that weren’t typical of his behavior, immediately followed by excruciating pain. The pain could not be feasibly managed at home, so I had to brought him back the to UC Davis ASAP. Even in the hospital,  when he was on strong pain meds round the clock (e.g., morphine, oxycodone, clonazepam, ativan and other all ON TOP of that), he was having the worst pain attacks we’ve ever seen! 

After they ran a brain MRI, they saw three new gigantic brain tumors, but brushed those off, as did our Stanford TSC Specialty Neurologist. They also subsequently did a CT scan of his abdomen, MRI of his abdomen, colonoscopy and endoscopy; and were unable to find “any life threatening sources of pain”. UCD & STANFORD have “determined” that these are now NOT pain attacks (even though they’ve been confirmed & documented pain attacks by ALL the UCD docs and nurses for months now) and then added an antipsychotic that off labels for many things and deferred everything to psych; & are NOW calling this 100% behavioral & discharged us after almost a month in this last time, WITH NO PAIN PLAN OR SAFETY PLAN. Instead, they gave me the “you’re a STRONG woman & excellent mother” speech.  When I asked his discharging attending, how “I can prevent him from throwing his body back head first onto tile and cracking his head open though?", I didn't get an answer. We were sent home with nothing: no resources, no safety measures, and certainly no days off. I was floored and felt more powerless now than ever!

During the 5th admission, I began going through all avenues trying to get to the head of pediatrics, as well as contacting some other resources for extra advocacy and responsibility checks and balances. The only good thing that’s come of UCD is this amazing pediatrician that specializes in complex cases and is attempting to adjust meds as much a needed at any time of day or night just to keep him safe and comfortable at home. On my birthday, Memorial Day,  and again the following Sunday, Jackson had the most painful and violent attacks. I was doing everything that I can to keep him safe but during these attacks, but he was violently biting himself and pulling his own hair, while I’m restraining him to ensure he’s in a “safer” area. Because he has autism, he’s doing everything he can to wrap his delicate mind around having pain attacks, anxiety, and autism meltdown behavior attacks, and we are using everything in our toolboxes to help him and keep him safe. Yet, prior to ‪February 20th‬, he did not have a single one of these behaviors. These behaviors only began to occur when they left him in excruciating pain, while simultaneously being paid millions and millions in insurance money, and were focused SOLELY on emptying his bowels, which they didn’t accomplish until two days prior to discharge the 5th admission. They NEVER looked at his primary diagnoses first, let alone, second or third; instead they blamed autism when they couldn’t find a diagnosis and didn’t want to take the responsibility. Now we have a young, innocent child who’s constantly on medication for pain and/or anxiety, and is often in excruciating pain. To give some context, I’ve left the house maybe a handful of times, for either meds or food for jacks, all within a 1 mile radius since we left the hospital on May 16th. It takes myself, my mom, dad, and hopefully the availability of nursing or respite, to be constantly work with him to keep him safe, from himself or normally safe objects (such as the floor) that he can make dangerous if he is in pain. 

Just a few weeks ago, I was finally allowed a moment to call his specialist at Stanford myself, and in which conversation, she told me she does not believe that they’re pain attacks AT ALL, that it sounds like the best option is to either PLACE HIM IN A FACILITY or GIVE HIM UP TO THE FOSTER CARE SYSTEM!!! I don’t know how the foster care system can keep him any safer or provide him with more love and affection than I can.

But, we need help, both in terms of funding and people! And this is what we are asking for!
I would like to sincerely thank you for your patience if I have not had the chance to get back to you, but as you can see, we have been clearly consumed. I also want to thank you for all of the  prayers, well wishes, Mother’s Day wishes, birthday wishes (both mine & Jacks’). I want to give a HUGE THANK YOU to our dear family friend, Matt Burdman, for setting up and getting rolling a GoFundMe, for Jacks and me, in this enormous time of need. There already has been donations coming in, and there are auction items on eBay to go towards donations as well. THANK YOU SO MUCH TO ALL OF OUR DONORS (both auction items as well as monetarily): TO EACH AND EVERYONE OF YOU THAT HAVE TAKEN THE TIME TO READ ABOUT MY BOY & SHARED AS WELL! It means more to us than you know. Funds are needed for: 1. moving immediately from Placer County (from Sacramento County) to be closer to his hospital and services, 2. any/all paid nursing & respite (as there’s a nationwide deficit in In-Home-Nurses & qualifies respite workers), 3. any/all therapies needed to help him stabilize, and 4. a seizure bed that’s safe for him and his new needs. 6. Materials to make the house safe for him; as his needs are rising. Also, if possible, seeking out help from any other hospitals, researchers, doctors, alternative medicine docs, etc that may actually see what’s happening, and want to help find the source of his pain. You all are amazing and such a blessing in our lives. Every little bit makes such a huge impact for us. 
Thank you all dearly, 
Rayna Bell + the courageous Jackson James

                     Special Thanks:
1)    Jackson for fighting SO hard!!
2)    Corbett Redford of the Turn It Around:EBP Doc
3)     Art Alexakis of Everclear
4)     The  GD "Idiots of LA, Italy and beyond", 
 5)    Eleonora Gatti of  https://straydolls.com/  
 6)   The greatest comedian in the world,  Mr. Ben Gleib
 7)   Visual Fire Productions by JaMarlin Fowler
 8)   The Library Tavern of San Diego, California!
 9)   Family and friends, both near and far. Thank you!
10)  You! Thank you for being here, lets make a sincere difference and TODAY!

      Thank you for caring, together we can help heal Jackson. -Matthew on behalf of the Lewis' and their entire extended famly. 

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$3,827 of $10,027 goal

Raised by 57 people in 12 months
Created May 21, 2018
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