388
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Healing Hendrix

$55,570 of $75,000 goal

Raised by 407 people in 15 months
Dear Friends & Family,
 
Most of you are aware that our son Hendrix has been having a pretty rough time the last couple of months. We now think everything began this past November when he was diagnosed with walking pneumonia. Soon after that diagnosis, we noticed he started having motor tics and began complaining of neck pain, nausea and stomachaches. About that same time he started having difficulty at school, pulling away from friends, sports and all of the things he normally loved to do. Unfortunately, that was just the beginning of our story.
 
On February 13th, with no previous warning, Hendrix began shaking uncontrollably, slurring his words and making jerky, uncoordinated movements. His eyes were dilated and he was exhibiting the signs and symptoms of a stroke, brain tumor, or a seizure disorder. As you can imagine, even though Jalayne is an RN, we were very scared, especially since Hendrix himself asked to go to the hospital because he could not control his own body. We drove him to the ER, but on the way Hendrix became extremely confused and did not remember where we were going or why. By the time we saw a doctor, Hendrix returned to normal and after a short assessment, he was discharged. Unfortunately, over the next week, Hendrix deteriorated rapidly and was unable to attend school and both of us were unable to go to work.
 
On the night of the 22nd, Hendrix became so unhinged that we called 911 and left for the ER in restraints in an ambulance. Two hours later, he returned to normal and the hospital discharged him again with nothing more than another basic exam. The next morning, we took Hendrix back to his pediatrician’s office and begged for help and for them to admit him to the hospital for further testing. Finally, Hendrix was admitted to the hospital for three days. After his tests showed relatively normal/benign results, we were told that our son was medically cleared and that we had a behavior issue on our hands and he was discharged. Three hours after that discharge, we had to call 911 again because Hendrix became worse than ever before.
 
Once again we arrived to the hospital via ambulance with Hendrix on a stretcher. We requested readmission to the medical floor for further testing, but our request was denied since Hendrix had just been medically cleared. We were then advised that the best place for him was the psychiatric unit. We spent three days and two nights in the ER with him waiting for a room to open up on the psychiatric unit. As you might imagine, there are no words to explain the stress, confusion, despair and guilt we felt during that time. Knowing this was a medical issue, we agonized over the best thing to do for our son and ultimately decided to follow our instincts and asked to be discharged immediately.
 
We returned home and at this point were now in the middle of a full-blown crisis. Our family was completely overwhelmed. It has been devastating for us to helplessly watch the Hendrix we know and love decline and deteriorate physically, mentally, and emotionally right before our eyes. There are no words to describe the nightmare our family has been living. We just wanted our little boy back.
 
After months of dealing with non-responsive caregivers here in California we chose to get on a plane and take Hendrix to the East Coast to see specialists at NYU and St. Peter’s Hospital at Rutgers. So many wonderful souls went out of their way to help us with this complicated, expensive and risky journey traveling across the country with a very sick child. Thankfully the trip was the right decision because Hendrix has finally been diagnosed with autoimmune encephalitis (along with PANS and Neuropathy) and received his first treatment infusion of IVIG on May 11th just in time for his 10th birthday.
 
Autoimmune encephalitis is a rare disease that causes inflammation (swelling) of the brain. The doctors believe that the walking pneumonia infection triggered Hendrix’s body to attack his brain causing severe neuropsychiatric symptoms, as well as cognitive, memory and movement dysfunction. Hendrix has been plagued with a wax and wane of debilitating symptoms including memory loss, confusion, severe separation anxiety, hallucinations, altered personality and behavior, psychosis, movements that he cannot control, clumsiness, difficulty walking, talking, chewing and swallowing, auditory/sensory issues and sleep disturbances. Basically, his brain is on fire, resulting in a sickness that is nearly impossible to describe. Because of this, we have not been able to leave Hendrix’s side, he has not been able to return to school and we both have been unable to return to work.
 
The positive news is that many children have recovered from encephalitis and the brain has an amazing potential to heal. Prompt diagnosis and early treatment greatly improves his chances of improving. That said, we have a very long and difficult road ahead for all of us. Hendrix needs multiple infusions and extensive cognitive, physical and psychological therapy and at this point we do not know when we will be able to return to work. It's a very scary situation to face. 
 
We continue to live day-by-day and sometimes minute-by-minute. Some days we see more of Hendrix and other days we wonder if we will ever have our son back. We remain positive and are ever hopeful that Hendrix will recover and we will not rest until we have tried everything to save him. We have come to realize that this is more than we can handle alone and are now reaching out to our friends and family asking for help in regards to Hendrix’s medical care and expenses.  

We will be grateful for any donation but we completely understand if you are unable to contribute. Prayers for Hendrix and for our family are needed as well. 
 
Thank you!
 
 Beau & Jalayne 

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We are quickly approaching the one year mark of our first ER trip with Hendrix’s bizarre symptoms. Yesterday, Hendrix received his 6th IVIG infusion. He had been counting the days, stating that he felt like he really needed this infusion. It has been a rough week for him and we had to cancel physical and occupational therapy, as well as home school. While we have continually seen progress, the dips are much bigger now than ever. The better he gets, the bigger the drop off when he can’t think or reason. There are times when his “good” part of the brain is dominant and Hendrix is back. He is quick, funny, walks our dog, is able to have full conversations and takes a shower by himself (we’re still in there just in case, but he does all the work) and etc. Then all of the sudden, we are mid conversation and he tries to say something, or perform something he has done a million times before, but he suddenly can’t reason or remember or understand and it frustrates him because he knows he should understand but can’t make the connection and then BOOM!!! He explodes, it’s as if the “bad” side of his brain has now taken over and becomes the one in control and then Hendrix rages. Not so much physically, but emotionally and this completely breaks him down until his body turns on him as well.

When one of these episodes occur, the stress/anxiety not only effects his mental state but also causes his body to physically shut down. Two days ago, Hendrix became so stressed about going to therapy that we went completely limp as we were walking out the door. I saw it happening and was able to catch his fall. Beau and I had carried him to the car. This is not an uncommon occurrence, but this time I stopped record it to show all the doctors. Beau and I try to explain what this last year has been like, but there is only so much words can explain and unfortunately, you have to live it to truly understand the extremes this sickness taken Hendrix to. When I shared this with video yesterday with our family and a few friends, the response was shock and that they didn’t realize how bad things were. Because when Hendrix sees them, he is so excited that he is able to be in control of the situation and it’s in these moments, when he is the happiest, that it can almost seem as if nothing is wrong. Something is definitely amiss and off, but nothing to the levels his sickness normally operates at. The video shows only one of the ways this sickness effects Hendrix, but speaks a thousand words that we could never get across as to how severe his symptoms are. We tend to be pretty private people and sharing something so personal and painful is very difficult and not something that we would have considered in the past. However, things are different now, way different. For one, we have had to let go of control of almost everything. Terrible things happen to good people all the time, it’s what you do with it that defines you. We refuse to let this illness define us or destroy us and this is one thing we still cling to control. I do believe that if we go silent, nothing good will ever come from this nightmare.

One of the most frustrating things for us, is that we are still on wait lists for neuro/cognitive/ behavior evaluations and therapy as well as psychiatry. This makes no sense at all, because if his arm was broken he would get seen immediately, but since it’s his brain that’s “broken” we are put on a wait list which they are unable to give us any time frame on.

We are desperate for any help, resources, connections and/or knowledge we can get in terms of trying to help Hendrix and survive this ordeal. We also want to bring awareness to this horrifying disease to help others going through it or help educate caregivers and family members about this illness. We also felt it was important to share this with those that helped us to survive this past year. You have been our life savers and we could never have gotten to where we are today without your help!

Lots of Love,
Jalayne and Beau
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It’s hard to believe that the holidays are here. It’s always the time of year that makes us think of those we love and miss and hold special in our hearts. We apologize for not giving an update on Hendrix in a while. We are also, embarrassing as it is to admit, behind in our thank you notes, call backs and such. Being completely overwhelmed with everything is our only reason and is not an excuse but just our reality and we apologize for this, as without your support we could not have gotten this far. In a time when we literally felt like we were swirling down the drain, there are certain individuals that we will never forget how they threw us life lines and for that there are no words to express our gratitude. Those of you that donated money, personal time, or whatever resources you could offer have been our light in the darkest and scariest time of our lives. We can honestly say that there is no way we are in this position today without your help.

Who would have thought that after 2/13/18, our first trip to the ER with Hendrix, that we would all still be dealing with all this nightmare? It’s taken almost a solid year from us. The testing done at Children’s Hospital of LA only led to deepen the mystery surrounding his illness and this extraordinary situation further. In fact, to date, Hendrix has had over 50 different abnormal results in regards to blood work. This doesn’t include the abnormal EEG, EKG, and PET MRI that were all abnormal as well. We did finally meet with the physical rehab doctor in Los Angeles. Unfortunately, the evaluation was on the morning of the lumbar puncture and Hendrix was stressed to say the least. He completely regressed and was not able to walk or talk well and the doctor did not believe he could commit to their rigorous 3 hours a day of therapy and therefore, was denied the 6 week inpatient physical rehab unit. That was a big blow and we had to take some time to “start over” and develop a new plan.

It was a long and painful 13 weeks of no treatment in attempt to achieve more accurate results. We did make it through it and Hendrix finally received his 4th IVIG infusion just 3 weeks ago. During this time, we got Hendrix in to see another pediatric neurologist who specializes in movement disorders. She has ordered genetic testing and a repeat video EEG, among other things. Hendrix will go back into the hospital 12/11/18 for 3 days and his 5th IVIG is scheduled for 12/18/18. He has started outpatient physical and occupational therapy and those have been very helpful. He is still in need of psychological/cognitive- behavioral therapy and we are just starting to navigate through that. We also hope to start home schooling after the new year.

It has been so hard to watch what this terrifying experience has done to each of us over the last 10 months, as individuals and as a family unit. There is an invisible evil illness that lives with us and rules our daily lives. It has complete control and sometimes we feel like we will always be imprisoned by it. Coping with an extremely rare, complicated, and unpredictable condition that shows no mercy and has no boundaries has left us all with permanent scars and we are all in need of some therapy. The illness needs no name because it means nothing until you have actually witnessed it…. Only then can you truly understand its complexity and the profound effect it has had on Hendrix and all of us. There are many times there are no words to describe what is happening to him. It’s so hard to explain or understand as we will go weeks moving forward positively, each day slowly progressing. And then boom, it turns for the worst. Nothing logical that you could wrap your head around but something happens and he’s unable to even perform the most basic of functions. This overwhelms and frustrates Hendrix, because nothing makes any sense at all and he regresses almost back to day one. Then our emotions follow and bring us back to relive it all over an over. This past year has gone beyond anything we could have ever imagined in our darkest fears or could have ever prepared for. There are times we think, this can’t get worse, then hours later, it does. This illness shows no mercy and has forced us to endure things that Hendrix can’t even remember and things Jalayne, Layla and I try hard to forget.

We have learned a lot from all this. We try to look for positive in the negative. What we used to think was important just isn’t anymore. We have learned new levels of patience, tolerance, forgiveness, acceptance, defeat, perseverance and how to accept/understand complete loss of control. Its humbling, you never know how strong you are until you are put to the test. Life does not slow down no matter what the situation. Aside from Hendrix’s condition and all that that entails towards our personal lives, the toll it has taken on our professional lives has been a heavy one as well. Jalayne is a RN and had a full-time job as the Director of Clinical Services. But after not working for 9 months, she lost her position and her full-time status with benefits. I have a retail shop, The Scooter Farm, and my absence over the past months has taken its toll on the business and I can’t imagine where it would be without my unbelievable business partner covering my back and carrying all the weight this entire time. Jalayne is currently looking for work, however, as Jalayne and I are the only ones who are able to care for Hendrix, we are presented with the huge challenge of finding an employer who will be able to accommodate to our ever-changing situation. In the meantime, she has decided to turn this experience into a new learning journey for her and is contemplating going back to nursing school in order to help other children with brain injuries and encephalitis. With all the late night hours of research she has done on Hendrix’s illness, along with all the battles with insurance and filing appeals, she hopes to offer a life-line to other children and their families who are forced to endure what we have had to. She wants to bring awareness to this illness and the probability that many children may have been mis-diagnosed as having a psychiatric issue and placed in psychiatric units and put on heavy medications. Hoping that this new awareness will bring about a new way of thinking and bring change to laws to better protect these children and their loved ones.

We do have some positive news to end with. We recently got a new addition to our family, Maple Syrup Torres, our new therapy/service dog. We believe she was sent by our angels to help us through this difficult time. She has opened up something in Hendrix that the illness had blocked from him and stolen from us. He thinks about her needs and wants to take care of her. She gives us light, love and tons of joy and giggles, all of which has been so unbelievably good for our souls and healing for our hearts. Animals truly are wonderful in so many ways.

Please continue to keep us in your thoughts and prayers. We love you and wish you and your loved ones Merry Christmas, Happy Holidays and Happy New Year!


Jalayne and Beau
+ Read More
It’s hard to believe that the holidays are here. It’s always the time of year that makes us think of those we love and miss and hold special in our hearts. We apologize for not giving an update on Hendrix in a while. We are also, embarrassing as it is to admit, behind in our thank you notes, call backs and such. Being completely overwhelmed with everything is our only reason and is not an excuse but just our reality and we apologize for this, as without your support we could not have gotten this far. In a time when we literally felt like we were swirling down the drain, there are certain individuals that we will never forget how they threw us life lines and for that there are no words to express our gratitude. Those of you that donated money, personal time, or whatever resources you could offer have been our light in the darkest and scariest time of our lives. We can honestly say that there is no way we are in this position today without your help.

Who would have thought that after 2/13/18, our first trip to the ER with Hendrix, that we would all still be dealing with all this nightmare? It’s taken almost a solid year from us. The testing done at Children’s Hospital of LA only led to deepen the mystery surrounding his illness and this extraordinary situation further. In fact, to date, Hendrix has had over 50 different abnormal results in regards to blood work. This doesn’t include the abnormal EEG, EKG, and PET MRI that were all abnormal as well. We did finally meet with the physical rehab doctor in Los Angeles. Unfortunately, the evaluation was on the morning of the lumbar puncture and Hendrix was stressed to say the least. He completely regressed and was not able to walk or talk well and the doctor did not believe he could commit to their rigorous 3 hours a day of therapy and therefore, was denied the 6 week inpatient physical rehab unit. That was a big blow and we had to take some time to “start over” and develop a new plan.

It was a long and painful 13 weeks of no treatment in attempt to achieve more accurate results. We did make it through it and Hendrix finally received his 4th IVIG infusion just 3 weeks ago. During this time, we got Hendrix in to see another pediatric neurologist who specializes in movement disorders. She has ordered genetic testing and a repeat video EEG, among other things. Hendrix will go back into the hospital 12/11/18 for 3 days and his 5th IVIG is scheduled for 12/18/18. He has started outpatient physical and occupational therapy and those have been very helpful. He is still in need of psychological/cognitive- behavioral therapy and we are just starting to navigate through that. We also hope to start home schooling after the new year.

It has been so hard to watch what this terrifying experience has done to each of us over the last 10 months, as individuals and as a family unit. There is an invisible evil illness that lives with us and rules our daily lives. It has complete control and sometimes we feel like we will always be imprisoned by it. Coping with an extremely rare, complicated, and unpredictable condition that shows no mercy and has no boundaries has left us all with permanent scars and we are all in need of some therapy. The illness needs no name because it means nothing until you have actually witnessed it…. Only then can you truly understand its complexity and the profound effect it has had on Hendrix and all of us. There are many times there are no words to describe what is happening to him. It’s so hard to explain or understand as we will go weeks moving forward positively, each day slowly progressing. And then boom, it turns for the worst. Nothing logical that you could wrap your head around but something happens and he’s unable to even perform the most basic of functions. This overwhelms and frustrates Hendrix, because nothing makes any sense at all and he regresses almost back to day one. Then our emotions follow and bring us back to relive it all over an over. This past year has gone beyond anything we could have ever imagined in our darkest fears or could have ever prepared for. There are times we think, this can’t get worse, then hours later, it does. This illness shows no mercy and has forced us to endure things that Hendrix can’t even remember and things Jalayne, Layla and I try hard to forget.

We have learned a lot from all this. We try to look for positive in the negative. What we used to think was important just isn’t anymore. We have learned new levels of patience, tolerance, forgiveness, acceptance, defeat, perseverance and how to accept/understand complete loss of control. Its humbling, you never know how strong you are until you are put to the test. Life does not slow down no matter what the situation. Aside from Hendrix’s condition and all that that entails towards our personal lives, the toll it has taken on our professional lives has been a heavy one as well. Jalayne is a RN and had a full-time job as the Director of Clinical Services. But after not working for 9 months, she lost her position and her full-time status with benefits. I have a retail shop, The Scooter Farm, and my absence over the past months has taken its toll on the business and I can’t imagine where it would be without my unbelievable business partner covering my back and carrying all the weight this entire time. Jalayne is currently looking for work, however, as Jalayne and I are the only ones who are able to care for Hendrix, we are presented with the huge challenge of finding an employer who will be able to accommodate to our ever-changing situation. In the meantime, she has decided to turn this experience into a new learning journey for her and is contemplating going back to nursing school in order to help other children with brain injuries and encephalitis. With all the late night hours of research she has done on Hendrix’s illness, along with all the battles with insurance and filing appeals, she hopes to offer a life-line to other children and their families who are forced to endure what we have had to. She wants to bring awareness to this illness and the probability that many children may have been mis-diagnosed as having a psychiatric issue and placed in psychiatric units and put on heavy medications. Hoping that this new awareness will bring about a new way of thinking and bring change to laws to better protect these children and their loved ones.

We do have some positive news to end with. We recently got a new addition to our family, Maple Syrup Torres, our new therapy/service dog. We believe she was sent by our angels to help us through this difficult time. She has opened up something in Hendrix that the illness had blocked from him and stolen from us. He thinks about her needs and wants to take care of her. She gives us light, love and tons of joy and giggles, all of which has been so unbelievably good for our souls and healing for our hearts. Animals truly are wonderful in so many ways.

Please continue to keep us in your thoughts and prayers. We love you and wish you and your loved ones Merry Christmas, Happy Holidays and Happy New Year!


Jalayne and Beau
+ Read More
Don’t believe in Angels? You should, we just had two knock on our door.

A woman, who was in town for her dear friend’s funeral, stopped by our house and said she had grown up here as a girl and was wondering if she could come in to take a look around and reminisce over her childhood memories. While we were going through the house and talking, she met Hendrix. When we explained his situation, she immediately said that we should meet her husband who was waiting in the car and ran out to grab him. When they came in, he explained that he is a pulmonologist at Children’s Hospital of Los Angeles and while Hendrix’s condition was not his field, he has a colleague whose expertise deals with Hendrix’s situation and would gladly refer us to her.

Aside from the condition affecting Hendrix, the roadblocks, the helplessness, insurance hassles, appeals, sleepless nights and worst of all, the unknown, it can be absolutely overwhelming and at times, does get the better of us. It was one of these times that we received the knock at our door. Serving as a reminder to us, that we are never alone and that we do believe in Angels.

We have since met with the doctor we were referred to and feel like we have some fresh air and direction again. She wants to admit Hendrix to Children’s Hospital of L.A. for testing and treatment, after which he will enter an in-patient physical rehab unit for pediatrics for a 6 week program. This unit is wonderful and will offer occupational, speech and physical therapy along with teachers to help him finish the 4th grade. In Hendrix’s mind, he sees it as a boot camp to kick his butt and help get him back to himself. He is scared but excited to go. He has responded positive to each of his IVIG treatments, gaining more momentum with each one. The 3rd treatment made a huge impact and brought us more of Hendrix himself. Which has really set him up for being able to be in the right mind frame for what we are about to embark on. Lots of moving parts in different directions. One parent gets to stay with him the entire time so that is a relief to all of us. Jalayne will initially go with Hendrix and I will stay home with Layla, who will be starting 7th grade at a new school. Once we get everything settled we’ll rotate. In the meantime, Layla and I will take the train every weekend to see them, root Hendrix on and make sure we are together as a family as much as possible.

Hendrix continues to improve and at times is as witty as he has ever been, but never as fast or as often as we would like. We are hopeful that this new doctor, new direction, and the pediatric rehab unit will make significant improvements in Hendrix’s journey towards progress and recovery. We continue to be so grateful for everyone’s love, help, encouragement and prayers.

Always Forward.

Beau and Jalayne
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