SIONE MAFI - Funeral Expenses

Hi, My name is Kayla Mafi and I am raising money for my son, Sione and our little family.

Sione is 5 years old. He is the middle child of 3. He has a 7-year-old brother and a 4-year-old sister.

Sione hasn't had the greatest luck when it comes to his health, but that never stopped him from being the happy and energetic kid he has always been. Sione was born with Down Syndrome, bilateral clubbed feet, severe cataracts, Atrial septal defect (ASD), Ventricular septal defect (VSD) and an Atrioventricular canal defect (AV Canal). Over the last five years, Sione has gone through four eye operations, an Achilles heel cut, and a benign tumor removed from his vocal cord. In 2018, one month after Sione turned a year old, he was diagnosed with Aplastic Anemia, a rare blood disorder, especially for kids with Down Syndrome. Little did we know what this journey would entail. We stayed bedside at Seattle Children’s for about a month and then our family moved into the Ronald McDonald

House. This would be home for the next 6 months before we would be able to go back home. We continued Sione's treatment for his Aplastic Anemia for another year and a half. Finally, in January 2020, Sione was considered to be in remission from AA. Sione would go on for the next 2 years living his best life without a worry in the world. Just like any kid should.

Fast forward to October of 2022, Sione began to be very agitated not only at home but school. He started hitting himself on the right side of his face giving himself bruises. He would also scratch himself and others to the point there would be blood. I brought Sione to his pediatrician and we found out he had a slight ear infection. He would then heal over the next three weeks. The only thing was, he did not stop hitting himself in the face or scratching. I noticed Sione wasn't pooping as well which was not uncommon. His bowels were always all over the place. At this point, Sione has a black eye and all kinds of scabs on his neck so I decided to take him back to his pediatrician on Tuesday, November 29, 2022, to be checked and let her know he has not pooped in weeks. Nothing was thought to be wrong by his pediatrician except he had an ear infection on the opposite side of where his hitting was happening. That seemed strange. She also wasn't concerned with Sione not pooping for 3 weeks so, we went home with an amoxicillin prescription. Over the next few days while Sione was on his antibiotics he was continuing to get sicker and sicker. I then took him to St. Michael Medical Center ER on Sunday, December 4, 2022. I explained everything to the nurses about what was going on and was assured I would be getting an XRAY of Sione's belly. Well, 3 hours go by and the ER Doctor came in and tells us he does not want to do an XRAY because the only thing we will see in there is that he is full of poop. We were sent on our way with no light in sight.

On December 9, 2022, we decided to make our way out to Seattle Children's Hospital's Emergency Department because we needed answers. After some blood work, the Doctor came in to tell us some of his levels were extremely high and it was pointing to pancreatitis. At that point, we were told Sione would be admitted because he was very sick. We then went to XRAY to get a better look, but that didn't show what they were expecting so they decided to do an extensive ultrasound on Sione's abdomen. We were in that ultrasound

for almost two hours just taking images and another hour because doctors were discussing the images. Finally, we made our way back to our room in the ER. We waited about 20 minutes before the Doctor came back and told us Sione has a massive tumor growing in his abdomen that was crushing his organs, especially his kidneys and blocking off a section of his large intestine. Everything at that moment came crashing down. Without saying it I knew exactly what the outcome would be. CANCER. Over the next seven days, I would have conversations with Oncology about this being some sort of Lymphoma because of the tumor. Well, that didn't turn out to be the case. On December 14, 2022, Sione was diagnosed with AMKL which is a subform of Acute Myeloid Leukemia and is common

in children with Down Syndrome. The part that was stumping Doctors at this point was the rare-formed tumor considering he was diagnosed with blood cancer. Sione then needed to have a central line placed for chemotherapy because the ones they originally placed were for Dialysis. They were under the impression that Sione will not need Dyalisis as they originally thought due to his crushed kidneys. Everything seem to be fine, Sione was in the OR as I waited for the message that it was all done. It took a little longer than expected. I was then sent to a room to talk to the surgeon about how it went. Well, everything went perfectly fine until the very end when Sione stopped breathing. They weren't sure what was happening but then discovered blood in his lungs. Just great

right? They decided to keep Sione intubated because overall it was safer and they could continue to pull the blood out through the tube. I have talked with oncology, hematology, infectious disease, rheumatology and any other MD you could think of, and not a single one of them has any idea of what is causing his lungs to bleed. As of January 6, 2022, Sione now has kidney failure to add to his list of complex medical history. The only thing doctors say when they come in the room is "I'm sorry but we don't have any answers".

As a mother, I never thought this would be my or my family's life. I also wouldn't change it for the world. Sione has been the sunshine in all of our lives and continues to be just that. He is the definition of Strong. No matter what, I plan to be by his side through it all. This will be a very long, painful and, stressful journey for Sione and our family as he continues the battle for his fragile life.

Thank you for reading Sione's story.