Fight For Kylar

Kylar J Wright is a 20 year old young man who has been struggling with lung and bone marrow failure for the last 3 years.
PLEASE SHARE HIS STORY OF STRENGTH & COURAGE.

Kylar’s brave battle begins over 10 years ago when at the age of 6 he became severely ill & was admitted into Children’s Hospital in Denver, CO with acute liver failure. A family history led to a loose diagnosis of Auto Immune Hepatitis. Within a month of being released from the hospital he was rushed back to the hospital in severe respiratory distress. Kylar was intubated & spent 3wks in the Pediatric ICU. Kylar was diagnosed with a rare disorder called pneumocystis pneumonia, as well as HSV in his lungs. After a lengthy hospital stay & slow road to recovery, Kylar & his family attempted to find a new normal.

The summer Kylar turned 7 life was again turned upside down. Kylar began to show signs of severe bruising. Terrified, his family turned to the doctors for answers. Countless tests were preformed & repeated at regular intervals along with bone marrow biopsies with no clear diagnosis as to why this precious child's blood count was so low & getting worse. Several treatments were attempted but to no avail. Kylar would suffer for several years with fatigue, stomach problems, anemia & the loss of lung function. Pushing through & working hard, Kylar repeated 1st grade. He was a great student & concentrated on catching up in his reading. Without a clear diagnosis & continued health problems the family began to pick up the pieces.

Within a couple of years & having overcome so much already, the Wright family would once again have to come together to face another life changing battle. Sean Wright, Kylar's father was diagnosed with leukemia. Thankfully Sean responded well to oral chemotherapy & the cancer was placed into remission. Knowing that remission is not a cure, the decision was made that a bone marrow transplant was necessary. It was discovered that Sean's brother was a 10/10 match & summer 2006 they prepared for Sean's bone marrow transplant. After a month long hospitalization & a year recovering, the Wright family feels blessed that the procedure was a success. Today, Sean Wright is a husband & proud father of 4 & remains cancer-free!

Obstacle after huge obstacle the Wright family continued to press on. They continued to monitor Kylar's blood count, always aware his immune system was compromised & he would have to cope with a 40% lung function loss. So cope he did. Through the years Kylar focused his attention on hobbies that required less physical strain like fishing, drawing, skateboarding & golf. In 2007 the family relocated to New Mexico believing for a fresh start while dealing with the reality that Kylar's lungs were not getting better.

Ready to start his freshmen year  Kylar headed off to his first day of high school as a Los Lunas High School TIGER. As Spring 2014 approach with the end of his sophomore year near, Kylar began to feel ill. Running a constant fever, doctor's prescribed antibiotics. After the 3rd round of antibiotics Kylar was seen at University of New Mexico Hospital & admitted. The reason for his fevers was finally uncovered, he had Valley Fever with cavitary lesions in his right lung. This hospital stay would stretch out for 11 days before Kylar was well enough to come home. Just as Kylar focused on salvaging what was left of his summer break the fever once again returned & his symptoms quickly escalated. Kylar began coughing up blood.

With Kylar's family and doctors having more questions than answers, this hospital admission resulted in a different objective. Instead of just treating the symptoms of an illness the specialists would now focus on WHY his immune system was incapable of fighting off viruses. He was put on a heavy course of three different medicines that made him severely ill. Eventually Kylar started to respond BUT his bone marrow began to fail. He received 3 transfusions & a bone marrow biopsy was preformed.

It was finally determined that Kylar's current lung infection was caused by coccidioidomycosis, or Valley Fever. Valley fever is a fungal infection caused by coccidioides (kok-sid-e-OY-deze) organisms. It can cause fever, chest pain and coughing, among other signs and symptoms. Mild cases of valley fever usually resolve on their own. In more severe cases, doctors prescribe anti-fungal medications that can treat the underlying infection. But in Kylar's case with his compromised immune system the infection was never expelled. Now on the right cocktail of medications the infection was under control.

Around the same time the result's from Kylar's bone marrow biopsy we're available. Kylar & his family would finally have some answers after all these years. It took over 7 years for his marrow to finally unveil the problem. Kylar has been diagnosed with Monosomy 7. This is a genetic disorder in which the 7th chromosome is either missing an arm or gone completely. Definitive therapy is bone marrow transplantation prior to emergence of leukemia. Myelodysplastic syndrome (MDS) also develops in monosomy 7 prior to leukemia. Kylar has MDS & his prognosis is daunting without the bone marrow transplant. 

Kylar was scheduled for surgery on Thursday September 18, 2014. Now having a clear picture of the battleground Kylar & his family would have 2 1/2 weeks to prepare for the first course of action, a critical lung operation. Kylar's right lung had a large cavity in it that continued to harbor the Valley Fever. It had to be removed so that his body can better fight the fungus and he can be a candidate for the bone marrow transplant. 

Unfortunately, during the recovery process Kylar suffered a set back. His recovery was complicated by a pulmonary embolism & pneumonia in his left lung. It was determined that the best course of action was to intubate Kylar to relieve the stress & pain that he was suffering. Further complications arose when the tube had to be reinserted. Kylar went into cardiac arrest but staff was able to revive him.  He was in the hospital for 7 months including a 2 month stay at Children's Hospital Colorado. He had a lengthy recovery at home and worked at rehabilitating in preparation for bone marrow transplant. Unfortunately his lungs never fully recovered and there was lasting damage.

After 2 years of waiting for Doctors to decide how to move forward the family felt that Kylar needed better, specialized care. St Jude's agreed to take Kylar as a patient if they relocated to TN, so that's what the family of 6 did.  St Jude's was great at figuring out what Kylar needed. Unfortunately, shortly after moving, Kylar was told that he was not healthy enough for a Bone Marrow Transplant. A lung transplant would have to be done first.  They didn't even know how to proceed. The doctors said they would look for a hospital that would consider doing both.  They had never had a patient in his condition. After much searching and some refusals, University of Pittsburgh Medical Center agreed to evaluate Kylar. In January 2017 Kylar and his mom spent 10 days in Pittsburgh while tests were done.  It took a few weeks to get  the results.  The doctors were straightforward and made a new diagnosis and a scary prognosis.  His lungs were bad he needed to be on supportive oxygen at 3liters continuously, start pulmonary rehab, start new medications and several other demands needed to be met for them to agree to take Kylar as a patient. They diagnosed him with Pulmonary Fibrosis and less than a 2 year survival.  Kylar complied and St Jude's and UPMC worked hand in hand to try and raise his blood counts which had to be done prior to listing for lungs. Unfortunately they didn't get all the results they wanted.  In June Kylar's symptoms began to worsen and his oxygen requirements doubled. He was hospitalized August 8 at St Jude's and was transferred to UPMC September 13. Surgeons took 6 weeks to decide rather they thought the double lung transplant could successfully be performed. All of the doctors involved don't believe there has ever been a case like Kylar's, ever, in the world! This hospital has done 3 lung transplants followed by a bone marrow transplant but none of the prior patients have been in bone marrow failure.

Kylar is fighting to live and received word October21,2017 that he is officially listed for lungs! The family fully supports Kylar's decision to go for it. He is on 25 liters of oxygen now for activity and other supports have greatly increased too.  He passes his time drawing and working on his last class he needs to earn his HS Diploma. He has goals and dreams and he's not ready to give up on those. He is at the top of the list for new lungs and the family prays he gets his chance soon..

He has been accompanied by his mom, while dad is at home in MS working and caring for their 3 other children.  It's very hard for this close knit family to not be together but they want Kylar to have the care he needs. Everyone has sacrificed and they have a long road ahead of them. 

Kylar and his family need your help, support and prayers. A donation of any amount WILL MAKE A DIFFERENCE. Together we can make a difference. #FightForKylar 

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