The Incredible Story of a Teenager Fighting a Deadly Genetic Disorder
Help Save Him and Make History!
Imagine being a star athlete, a champion in multiple sports and getting straight A's in school by age 10. Imagine doing that while battling a terrible Genetic Disorder, suffering from 5 auto immune diseases. Imagine finding it at times impossible to walk or even hold a cup, debilitated by an additional 3 autoimmune diseases. Now imagine at age 13 being told there is very little hope and there are no definite solutions to your genetic disorder; your condition will lead to cancer and ultimately death before you reach adulthood.
Here's the Incredible Story of Luis "The Bear" Morales.
"The Bear" is Born
At 5 months old Louie was hit with his first autoimmune disease which wasn't diagnosed until after spending 2 months in the hospital. His body was unable to fight infection and was producing fevers between 101 and 107 degrees. At one point he died, his heart stopped due to complications stemming from high fevers. The nurse quickly prepared an ice bath and wet several small blankets, she wrapped and placed the quiet baby in the ice bath and prayed the cold shock would bring his fever down and CPR can be administered to bring him back. It was a surreal and very emotional experience.
A loud roar of a cry came from that small baby after a couple minutes in the ice bath. He came back to us in a fury of anger. The roar was unreal and unmistakable. All we could think of is, "Did that sound like a wild animal? Maybe a Bear?" We knew then that Luis was a warrior and would not be denied his right to live. The doctor said that with as high of a fever he was having he should be brain dead or at very least have an undetermined amount of brain damage. We were overwhelmed by that statement and prepared ourselves to care for mentally disabled child. Luckily that day never came as I am happy to report that his brain function is fine. By age 10 Luis "The Bear" was evaluated and determined to be Gifted, labeled as "near genius". To this day (age 13) Luis excels in school effortlessly all while battling a deadly genetic disorder.
The Pain and the Strength
Luis "The Bear" currently suffers from 8 autoimmune diseases. He deals with massive amounts of hair loss, loss of skin pigmentation, skin rashes, painful eye bulging, thyroid disease, Graves disease, and very painful Juvenile Rheumatoid Arthritis. Nearly every day is a nightmare for Luis, dealing with pain, a dozen different medicines and their side effects, seeing doctors twice a week; doing all this while trying to be a teenager and have fun.
His strength is uncanny, he doesn't shed a tear, doesn't complain...he fights, fights with all his heart every day. He treats everyday as a new battle, a war he must win, focused and determined, unstoppable.
Before his most recent diagnoses of Juvenile Rheumatoid Arthritis, Bear was a champion athlete, played nearly every position on the baseball field including pitcher, he is a multiple time tournament Tae Kwon Do champion and a Judo and Brazilian Jiu-Jitsu grappling champion. He also enjoyed other sports like basketball, and soccer. Unfortunately, now his condition has taken over his body, most days holding a cup or making it from his bed to the bathroom in the morning is difficult task and he requires assistance. Unfortunately, playing his favorite sports and competing in martial arts tournaments are no longer an option for him.
Putting it lightly, he is absolutely devastated. Not being able to do the things he loves and be an active teenager is the hardest blow he has taken in his life.
Down, but not out, our champion perseveres. When he is not seeing doctors he demands to be in school. For him, anything less than an A+ is unacceptable. He’s focused on expanding his mind and learning as much as possible. He plans to be a doctor; he has been known to openly talk about curing diseases to save children, saying:
"One day I will cure Cancers that take children, the answer is in the genes I just haven’t figured it out yet. I just need more time and more studying."
Honor in Martial Arts
His martial arts’ training has suffered significantly as he is no longer able to train as he would like. When he feels well enough to move efficiently he demands to train his martial arts. We are reluctant to comply because every single time he is active while training means a tremendous amount of pain immediately following his training. Most times after training, he is completely unable to walk and has to be carried out of the gym; again…no tears, no shame, no complaints, just a very visible demeanor of anger and frustration. We often say that he doesn't cry or shout because of that loud roar he let out as a small baby.
Most athletes will tell you that if you take away their ability to train and compete, it might as well be a death sentence. Nothing would satisfy him more than to get back to his routine of training martial arts.
Potentially curing his Genetic Disorder by way of a Bone Marrow Transplant will get him back doing what he loves.
We Must Act Now!
Luis has a Genetic Disorder causing his body to attack itself and doctors have confirmed that it will never stop and only get worse. He is in desperate need for a Bone Marrow Transplant.
He is classified under a Mystery Diagnosis. Due to him not being diagnosed, we are unable to get any special grants or attention for him. It is difficult to get an authorization from the insurance companies without a proper, straight forward, diagnosis.
He is averaging 1 to 2 new autoimmune diseases every other year. Some in their own right are deadly without proper treatment. Treatments range from monthly IV infusions, a dozen different medications taken daily; which all have an array of side effects that can be painful and irritating. After consulting with three different Immunologists and his Rheumatologist they have all concluded a Bone Marrow Transplant is necessary to Luis’ survival. There are no other options, no other treatments to consider, if he does not get the transplant his genetic disorder WIll take his life.
We are evaluating multiple facilities for the transplant and are testing his 8 year old brother to see if he is a match for the Bone Marrow Transplant. His little brother Nikolas is his biggest fan; there is no doubt that Luis is his hero. When Niko was explained what Luis is going through and why we need to test his blood he wept and then said:
"You know who is the number one person I love in this world? My brother Luis Morales. I know my blood will work and I will save my brother’s life."
When we looked up the name "Nikolas" we learned it is of a Greek origin meaning "Victory of the People". It couldn’t be more suiting.
If his brother doesn’t match then we will reach out to donor registries and pray for a perfect match.
Help Make History
Research, treatment and overall attention for multiple autoimmune diseases are very hard to come by. There are no special research facilities and there are no grants. I’ve been told several times by over a dozen doctors that they have never heard of or seen a case such as Luis’. I’ve also been told it is fair to say he could be the only one in the world with this Genetic Disorder. He does not fit into any particular category so that excludes him from getting the help he so desperately needs.
Insurance only pays for so much and Luis’ father works three jobs and his mother works part time as she is unable to work full time while tending to Luis, doctor’s visits, spending hours on the phone with the health care provider, picking up prescriptions, all while being an awesome mommy and wife.
That’s why we need your help to save Luis’ life!
We are expected an out of pocket expense of close to $300,000.00. This includes:
-Bone Marrow Transplant (Chemotherapy/radiation and the transplant, as well as an 8 month hospital stay)
-Travel Expenses (Treatment will be Out of state)
-Living Expenses (8 months living Out of state while he is treated)
-Food expense (while Out of state)
-Gas, lost work time/wages, co-pays, deductibles, etc.
Anything you can contribute will be a blessing and would greatly help. If you can't contribute, then your continued prayers would also be greatly appreciated. You can also help by Sharing our story on social media sites. Thank you for reading and thank you for your consideration.
The name Luis is of a Spanish/Portuguese origin meaning ‘Warrior’. Please donate and give Luis the weapons he needs to win his war.
Follow Luis at:
Instagram @help_teen_fight_deadly_ disease
- Soaidy Sooklall
- Greg Wilson
- Lori Altman
- Karie Mok
- James Kiang