Jett was born July 23, 2017, baby number three to Claire and Jon Trappe. Jett has an older brother, Jaxon, and an older sister, June, who love him very much. Jett was a healthy baby, weighing 9 lbs 14 oz at birth. Besides having some upper respiratory congestion early on in life, which was determined to be “normal” at the time, he has been a very happy, healthy baby. At 5 months old Jett’s mom and dad noticed a small lump on his back. Initially, nobody seemed too alarmed until the results of an x-ray prompted an MRI.
In January, at 6 months old, Jett had his MRI, which showed some alarming spinal abnormalities. This lead to every parent’s worst nightmare; Jett was diagnosed with an extremely rare genetic disorder called Muccopolysaccharidosis (MPS 1, or Hurler syndrome). MPS falls under the broader umbrella of what are called lysosomal storage deficiency disorders. In a nutshell, Jett has a genetic mutation of the gene that produces the enzyme that breaks down big sugar molecules produced by his body. Without this enzyme the sugar molecules build up everywhere, causing multi-system damage, ultimately leading to multi-system failure. Without medical intervention, Jett will be dead in 3-10 years.
During the MRI Jett was sedated. This sedation, coupled with a cold, caused Jett to spiral into severe respiratory distress in the days that would follow. Jett was rushed from the emergency room in Santa Rosa to the Pediatric Intensive Care unit at Oakland Kaiser where he spent a week. This was just a glimpse of the wrath that MPS will cast on this baby and his family.
After finding every article possible on the web about MPS 1, reading every study, and speaking to many parents of children with MPS 1, we decided to seek treatment at UCSF for a Bone Marrow Transplant (BMT). A BMT is a very dangerous procedure for a 7 month old baby, including the 9 days of chemotherapy that will precede, but is the only hope for any quality of life for Jett. The chemotherapy will kill Jett’s damaged cells and will be replenished with new cells from the BMT. These new cells will make the appropriate enzyme and halt further damage to most of Jett’s body. But make no mistake- a BMT will not cure Jett; there is no cure.
Since his diagnosis, Jett’s mom has been busy making multiple phone calls a day to arrange appointments at UCSF, blood draws, additional testing, and Enzyme Replacement Therapy (ERT) infusions. ERTs are intravenous infusions of manufactured enzymes that people with MPS are lacking. The ERTs will stop damage to MPS patients’ organs, but do not pass the blood-brain barrier, thus failing to stop the cognitive deterioration that is inevitable. Prior to his BMT, Jett has been receiving ERT treatments once a week, with each infusion lasting 4 hours. Jett is currently scheduled for admittance at USCF on March 20th to start the chemotherapy and then the BMT on March 29th.
After the BMT Jett will remain hospitalized for approximately 2 months as his body will begin to grow new cells and develop immune function. His brother and sister will not be allowed to see him for at least 6 weeks and visitors will be heavily regulated; any germs could be deadly. Once he is healthy enough to leave the hospital he will continue to live in San Francisco for an additional 1-4 months, as he will have daily appointments with UCSF doctors.
The BMT will give Jett’s body new cells that will produce the enzyme he is not producing but it will not “fix” the underlying genetic mutation. We do not know what life beyond transplant will look like, but do know he will face many obstacles along the way. The transplant and new enzymes will not fix his bones and the damage already caused. Therefore, it is likely Jett will have many orthopedic problems and require many surgeries throughout his life. Studies have shown that some of the other long-term problems in MPS patients include vision, hearing and cognitive disabilities. Other organ systems can be adversely affected as well, but each patient is different. We are hopeful this transplant will allow Jett to live a long life full of laughter and love.
Due to the fact that we do not know what the future has in store and we do not know what kind of medical equipment and treatments Jett will need that insurance does not cover; please feel free to donate here and help Jett's future look a little brighter. Any unused money will be donated to Our Fighter Jett Foundation to help other families in need as well as directly to research to help find a cure.
- Michelle Holguin
- Rick Elliott
- Nancy Yamamoto
- Lee Ann & Steve Reuter
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