Mason is a 16 month old child who has spent his life, since birth, in and out of the hospital fighting serious medical issues. He has always been sick but the professionals struggled to diagnose him therefore treatment was not available as there were too many unknowns. After many tests and procedures including genetic testing, he was diagnosed with heart failure and POMP, an extremely rare genetic autoimmune deficiency. To date there have only been 5 documented cases. Mason has received a great deal of medication to stabilize him and prepare him for chemo and a bone marrow transplant. His 3 year old sister Makenna will be his donor. Masons body, since birth, does not make enough antibodies to fight infection, this is all part of the rare Genetic Autoimmune disease that he has been diagnosed with. Because this disease is so very rare there are many unknowns, there can be many complications including brain tumors, liver failure, and heart failure. Therefore, many precautions and additional procedures go along with this process. He will go under chemo to destroy his current bone marrow and be infused with that of his sister in hopes it will help heal his deficiency. This has already been a long process. Mason will need to be in the hospital for a minimum of 3-4 months but then regular hospital visits will continue several days a week for the next couple of years, at a minimum. This is a very challenging, heartbreaking, and scary time for Mason as well as his siblings and Mom. For a parent to have 2 children in the hospital at the same time is heart wrenching.
Mom (Jordan), is a single parent of 3 navigating all of this while trying to maintain her mental and emotional health, her job during COVID times, and trying to keep a roof over their heads, which is nearly impossible. The hospital is 1.5 hours away from home which makes logistics a challenge as well. The support system for this family is very small. Grandma Connie has given up her apartment and job (source of income) and put her life on hold so she can be in the hospital full-time with Mason as he undergoes all of these procedures and isn’t left alone. Jordan is trying to maintain balance at home with her daughters in addition to being in the hospital but knows that even when Mason does come home, the road ahead is uncertain.
Words are not enough to express what this family has gone through, are going through, and will continue to face for some time to come. Thank you in advance for your support, prayers, and words of encouragement. We appreciate your kindness and generosity throughout this process.