Hendrix Satterfield Fundraiser

CashApp: @stamos23

06.28.2024

I am unsure of how to start this. It's something I am aching from having to do. I don't want to even type this at all, I just don't want it to even be real.

At this point in time I am at a loss of words. My brain is just so scattered and my mama heart is just broken.

My son needs help. My family needs help.

I'm going to start this off by saying thank you to everyone who has been praying for my son, Hendrix. It is beyond appreciated and I cannot put into words the gratitude I have for each and every one of you for taking time out of your day to think about him. It is deeply appreciated. ❤❤❤

I want to thank my support system too because I don't really know where I would be without you guys. Thank you for putting up with my tears, my heartache, my rants, my late night calls for Tylenol, and more. Lori Ammons, Holden Dunman, Tammie Crenshaw Barksdale, Jessica Hooper, Le'She Smith, Mary Loftis-Hall, Haivon Miller and so many others (if I did not name you please do not take offense. My brain is just scattered right now and I'm doing my best to process everything).

In April 2023, Henny was diagnosed with Covid. He was super sick from it. About a week or so went by and he was getting better.

He got sick again.

This time it was mono (which is very uncommon for someone his age). As time went by I noticed that he was really really sick. I took him to the doctor continuously. Over and over and over again I was told it was another virus because his immune system was so low, that he needed more time to heal, everything is showing up that he's healthy, and his body is in wonderful shape. His body functions and everything are normal, etc.

My son went from being the energizer bunny to not being able to walk up a flight of steps without being exhausted. He went from running, jumping, dancing, wrestling, and more to having to rest every few moments after just a short amount of steps. Some days were better than others, but the bad days he was down and out.

I knew something was off. Finally, Infectious Disease at VCU found that he had Covid antibodies in his bloodstream. He was diagnosed with Post Covid. The way it was explained to me is that the white blood cells (which are cells in the body that get rid of infections/things that are abnormal in the body) did not see the Covid antibodies as a threat. So, the Covid antibodies are just dormant in his system and aren't going anywhere. There are not many studies on PC and I was told there is no diagnosis for this along with no treatment. It must run it's course.

I was told this takes time to get over and that it could take 6 months, 1 year, 18 months, to 2 years to get over. It's kind of like mono, it gradually lessens over time and you get better. I was told he should return to normalcy and get better as time goes by.

It's been a year and half and he has became worse. Much worse. There are good days for him, and there are days where he's just so miserable. I have had to take him out of school and start home schooling him. He had to be pulled from karate (which he did with his brother and it just made him the happiest kid in the world to be side by side fighting along with him), and today he cannot even go to the park to play because it's too much on him. Water therapy is the best thing for him right now and we are working on that, and when winter time comes he will start physical water therapy for exercise.

A few months ago Hendrix had a cyanotic episode. A couple weeks after that we found out his heart rate is now extremely high. There is no telling how long this has been going on, but we caught it thanks to one of the doctors at Halifax Sentara Pediatrics. When I say his heart rate is high, I mean it's hitting extreme numbers. I have taken him to infectious disease control, cardiology, pulmonology, electrophysiology, and neurology at VCU. He has an entire team of doctors there. We have spent countless nights and days at emergency rooms and doctors offices just to receive the same information. There is no diagnosis for what he has. There is no treatment for this yet. We can only treat symptoms as they arise.

The last ER visit at VCU Pediatric Emergency Room two doctors gave me two different diagnosis, then I called them out on their slip up (The two doctors didn't know they both were seeing him). Finally, one of the doctors broke it down for me. There's a million things that could be causing these issues and due to him having PC that there is not enough information on it to treat him. That he has to see a specialist and go from there.

He told me it's easier to put a name on something for parents to point them in the right direction, but it's never 100% right.

Even though my son's heart rate is hitting anywhere from 120's-190's. Even though his blood pressure is dropping when he stands up. Even though his oxygen is dropping when he moves or does something active. Instead of calling a specialist in, instead of hospitalizing him to find answers, they sent him home and told me to monitor him.

I spent the next couple of weeks watching him while he slept. His heart rate started dropping in his sleep. I set alarms to make sure I didn't miss checking on him. We finally see the head of cardiology (the electrophysiologist) (a little over three weeks ago now) and he tells me it's okay for his heart rate to drop below 70 while sleeping. That it's okay if it even drops into the 30's. He made me hold his hands and told me they will help him.

He made me promise him that I would not check on him throughout the night and get some sleep. I listened to him.

I check on Henny before he goes to bed and before I go to bed every single night. I let it be for a few nights and slept.

He got paler.

He became more tired.

His temperature during the day started to become higher, 100.7, which is higher than usual. A week or two ago I broke that promise to his doctor and I'm so thankful I did.

If I had not checked on him that night....

I just can't even think about it. His temperature was 103.8 out of no where. I went back to the doctor again. THE SAME ANSWERS. It's a virus. Immune system is low. Keep an eye on him. Monitor him.

His heart rate has gone back down for now, but it staying in the 100's more often now. He's sleeping more often. He has had a rash on his face for over a month (I'm told it's a viral rash, then told it will clear up, then told to see an allergen after we clear up his heart condition, and now I'm being told to see a dermatologist instead because it's only on his face).

After the electrophysiologist appointment (which is head of cardiology) we saw cardiology (again). He explained to me that his heart function is perfect. Everything is where it should be and it functions exactly as it is supposed to. He was put on a medication to help with the high heart rate (which isn't working) and put on salt supplements. He was sent home with a heart monitor THEN sent another because I was sent a message stating that there was not enough information on it, but in reality there was and it was a screw up on their end (Everyone is human, I get it, but GET IT TOGETHER). Another monitor was sent. So I had Henny wear that one too just to record more data.

His heart rate hit 160 while sleeping one night while wearing that second heart monitor recorder.

A new echocardiogram was not done at the new appointment (because 6 months prior the first echo showed he had a good function but heart rate was faster than normal and was in the 120's, nothing majorly concerning). At this last cardiology appointment, as I had feared, the doctor said his issues were neurological. That until we meet neurology we will not know much more until then. He said that he should drink plenty of water for now and Gatorade. The cardiologist diagnosed him with neurocardiovascular disease. We're assuming it's from the PC.

Yesterday we saw a neurologist at VCU. She was wonderful and kind and funny. Henny really liked her. I did too. She wants to do an MRI on his brain, but she explained that unfortunately the MRIs usually come back normal with PC issues and that it will not show the type of information I'm looking for (I want to do a brain map to see where and how his brain is functioning, which they do not offer). Then after saying the MRI was needed, we were sent home to come back AGAIN to do the MRI on a different date rather than right then (MRI No contrast).

Not only this, but yesterday, AGAIN, we were referred to another hospital!!!!

Yesterday, I was told AGAIN that there is not enough information for VCU to help him. We have now been referred to the Children's National Hospital in Washington DC.

I have reached out to a psychology office I know of who does offer brain maps ($200 out of pocket costs due to insurance not covering it). We must go through consultation. Be accepted. Examined. See IF it's necessary etc. (This is all my doing and my opinion of another process to try along with a specific therapy).

Just as a suggestion from my own studies since it seems like everywhere I go there's nothing but smoke and mirrors of promises and resources and resolutions.

I am making this GoFundMe asking for help for Hendrix.

My son is 7 years old.

He's such a kind and wonderful kid. He loves to build things and see how things work. He's truly innovative and a genius at building things. He loves Star-Wars, Harry Potter, Legos, superheros, dancing, and music. He's truly an inspiration to me because through all of this he has remained resilient. He has remained positive and loving and kind.

My son is on the spectrum and has sensory issues as well. Not only does he have to start ABA but he even needs braces now too. He needs counseling just for what he's going through now.

There are days where he wants to quit, but I'm not letting those day knock him down.

We are remaining hopeful that he will get better. That he will get some type of quality of life back.

I need help getting my son to and from these places. Making sure we have places to stay when having to be somewhere over night because we are not available to used the Ronald McDonald houses due to not being inpatient. I need help with finding answers. I have to find my son a wheel chair to help him just to go do regular things. He gets so tired from just walking across the house or outside for 10 minutes (or less) that he has to sit down and rest. He cannot even walk through the grocery store with me anymore. He has outgrown a stroller and is outgrowing the wagon we had bought for this purpose.

I just want my son to have his quality of life back and for him to be able to do what normal every day kids get to do. I want to see him run and keep going. I want to see him break dance for 45 minutes because he's the man. I want to see him show me how strong he is without his body giving out on him. I want to see the color come back to my son's face. I want him to feel comfortable about his weight again because he's unable to exercise. I want him to be able to socialize and meet new people. I want him to be able to go to birthday parties and play, and for him to be able to spend the night at friend's/family's houses without me having to be there to make sure he's not overdoing it or going to fall out unconscious again.

I just want my son to have his life back.

Anything is helpful towards this fundraiser. Our Butterbean need love and support. Please keep him in your thoughts.

No parent should ever have to watch their child go through anything like this.

07.04.2024

I found out that money is taken from each donation and that adds up over time. I don't want people's hard earned money that they are kind enough to donate to my son for medical care and equipment take for other purposes (like the app making money off people's gofundmes. 2.9% with each direct deposit and 0.30 cents for each donation. So far $37.11 has been taken by the app and not sent to Henny's fundraise

Here is my CashApp for anyone who wants to avoid the take outs.

@stamos23

Also, Tammie Barksdale is accepting donations at her shop for Henny. We are working on getting more flyers too.

Thanks to the donations we have already recieved, we have been able to print them.

I'm hoping one day soon we will be able to get Hendrix his own customized chair.

Thanks to Barry Humphries, he now has an F22 and is able to get around easier and stay out longer than before.

Thank you so much everyone, the love has been unconditional. We are so thankful for all of the love and support. We are so appreciative and thankful for every one of you. Thank you