Our commitment to families that are fighting HLH with their loved ones is something that we are passionate about. Our mission is not only to raise money to provide funding for research on this rare disease but also to ease some of the financial burden for families that have been affected.
These brave families are sharing their stories here in the hopes to not only raise public awareness of this rare disease but to also provide much needed support to other families that are going through this same battle.
We would love to have you share your story with us. We welcome you to click here to submit your story.
A little bit of our story is that Arthur (Artie as we call him) was diagnosed with HLH at 5 days old after we asked for screening during his newborn screen. Our daughter Addy was also diagnosed with HLH when she was about 3 months old.
Artie went through his first transplant at 3 months old in Phoenix at the children’s hospital there. He had multiple complications during the transplant process including VOD and being septic. This was the cause of many admissions following his transplant release. Late in 2020, we got word from his team that his graft was failing and would need a Donor Lymphocyte Infusion in hopes of “boosting” his donor cells. At this point, with all complications, we decided to seek out a second opinion at Cincinnati Children’s Hospital for their HLH center of excellence.
We made a 32 hour one way drive to Cincinnati where my wife and I decided we would pursue treatment for Artie there. Artie and I then came to Cincinnati in March leaving my wife and daughter behind as she was still employed and our daughter was still in school. After about a month of tests and treatments here in Cincinnati, it was determined that Artie would need a second transplant. We then decided to move our family here as he would need constant medical help and wouldn’t be able to be far from the hospital.
Artie had his second transplant June 10th of this year. He is doing much better thankfully but is still dealing with some issues. During this time I have been unemployed since October of last year to be a full time caregiver as my wife had to take an extended unpaid leave from her job in Arizona and has just begun working here in Ohio this week. F
Foundations like yours are extremely important to families like mine as they generate a lifeline to keep us going during times of extreme mental and emotional stress. Having to think about finances on top of everything else is enough to drive you crazy. Thank you so much for what you do and the support that you provide. We appreciate if from the bottom of our hearts.
Rhyder is our 3rd son and is also our 2nd son who was diagnosed with HLH. Rhyder’s older brother, Rhaiden, was diagnosed with HLH when he was 2 months old after a month long of misdiagnosing. Doctors previously thought it was secondary and after genetic testing, they told us that it was and that it won’t come back again. When Rhaiden was 22 months old, he was diagnosed with HLH again. Our local doctors didn’t know why and so they contacted Cincinnati children’s for answers. We got in contact with Dr Michael Jordan and he suspected he had the XIAP gene and to get him tested for that. After about 8 weeks, it was confirmed that he did have primary HLH and that we needed a bone marrow transplant.
We moved our family to Cincinnati from Hawaii to seek the treatment needed for him to get through this disease. A week before Rhaiden’s transplant, I found out I was pregnant. They tested me to see if I was a carrier and later confirmed I was. Some doctors suggested to terminate my pregnancy but I refused. I was living with Rhaiden in the hospital through his bmt while my husband and our oldest son lived across the street at the Ronald McDonald house. A few months later, we got the okay to fly back home to Hawaii but my water bag broke at 27 weeks. I ended up in the hospital and had to be inpatient until I gave birth. I delivered Rhyder at 32 weeks and they tested him to see if he also had the gene which was confirmed later on.
From birth, Rhyder could not have any live vaccine and we did our best to keep him healthy. We were told that as long as he is diagnosed with HLH, he could live normally. But we were also told that he is a ticking bomb. We just don’t know when or what will make him sick with HLH.
In July 2020, he was diagnosed with HLH. He is now 5 years old and we are still currently waiting for a bone marrow match but no luck in finding one. He is currently doing infusion of Gamifant every 4 weeks along with daily oral meds to keep him stable until we find a match to do his bmt. His best match at this time is actually his little sister but doctors said that she is still too little to collect from and is an 8/10 match.
Rhyder is currently going to school as a kindergartner in the same school as his 2 older brothers. So far, he is stable with the infusion and daily meds.
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Thank you for letting me share my kids story.