Our son Rayden William Courage Darby was born on 7/11/18 in Spokane, WA. Our family is from the tiny town of Tensed, Idaho. Rayden was taken to the NICU right after he was born. He inhaled some fluid, had some low blood sugar issues and needed checked out to make sure the few physical birth defects we knew about were not life threatening. (We had found out mid pregnancy that he had some hemivertebra, only 1 kidney, and a club foot) While in the NICU we found out that Rayden has a small hole in his heart, that they say these kind are common and typically closes on its own and that they would recheck in 3 months. Rayden got a little jaundice but with the bili lights he quickly improved. We were preparing to go home within the next day or two when Rayden's newborn screening results came back abnormal and we were told that further testing needed to be done before he could go home. After long days of waiting for results we found out that Raydens body is not making any T cells. T cells are our bodies main immune system cells. They fight of viruses, germs, bacteria, fungal infections etc. T cells are made in the bone marrow and then sent to the thymus gland where they get educated and learn what to fight. So Rayden has no immune system. Fast forward to Rayden being 13 days old and he took his first airplane ride. He was sent to Seattle Children's Hospital. After 25 days of lots of tests, pokes, blood draws, genetic tests, IVs, numerous procedures (3 that required general anesthesia), and being treated for menengitis and sepsis Rayden finally got a diagnosis. Complete DiGeorge Anomaly (cDGA) . 3 words that have completely changed our lives, and will continue to do so forever. Complete DiGeorge Anomaly (cDGA) is a rare disease affecting approximately 1 in 300,000 babies. To look more specifically at what they believe Rayden has (because every case of cDGA is different) out of that 1 in 300,000. Babies with Complete DiGeorge Anomaly are born without a thymus gland, resulting in primary immunodeficiency (no immune system). cDGA is almost always fatal within the first 24 months of life IF the babies born with this are left untreated or their treatment to reconstruct their immune system is unsuccessful. There are 2 phenotypes associated with cDGA. "Atypical" complete DiGeorge Anomaly happens in 1/3 of patients and includes a rash and swollen lymph nodes that are caused by the few T cells the patient may have being uneducated and attacking the patients' own skin because the t cells don't realize that the skin is his own and not somthing they need to fight. In "Typical" complete DiGeorge Anomaly the patients have none to few T cells, no rash, and no swollen lymph nodes. We were just told about this Facebook page specifically for kids needing thymus transplants and I hope that you will all take the time to like and follow it. It's called "Thymus Transplant Awareness" They have some great information and this is something that awareness should definitely be brought to!! But at least now we have a diagnosis and can work with Rayden's doctors for a plan of action. Currently there are only 2 places in the world doing thymus transplants. Duke University in North Carolina and a hospital in London. It is still considered an experimental procedure and they are currently in the process of getting fda approval. Duke's thymus transplant program is currently closed until further notice for expansion of their lab and updating of their equipment. It's a very long process to even get accepted onto the wait list because they are only able to take a couple of handfuls of patients a year. So we have turned in our packet and now just have to wait to see if Rayden is accepted to get a thymus transplant. KaiLee and Shailyn (Rayden's full siblings ages 11 and 3) were tested to see if one of them is a 100% match to Rayden for a bone marrow transplant. We have found out that one of them is a full match. As a rescue, we can do a bone marrow transplant to help buy Rayden some time if the outlook is looking too grim to wait around and do nothing. The major risk of the bone marrow transplant is the autoimmune part of Rayden's condition would probably not take the transplant well. And graft vs host is frequently fatal for babies with no functioning immune system. Currently we are living in Seattle in a transplant house but would love to go home back to Idaho once doctors feel that it's safe to do so, sadly we have nowhere to come home to. We have given up most of the things we have worked our whole lives to get in order to be with Rayden. Our family is really struggling. Rayden's Dad Frank would gladly go back to work but doctors here do not advise him or mom working and bringing germs back home because it's risking Rayden getting sick. We can't even move back to our home in Tensed because it doesn't meet the few requirements our immunology doctors have set. if we can't get help and pay our bills the next few months until Rayden can get approved for disability, Rayden's dad Frank will probably have to move to a seperate place and get a job (although there is no way the family can even afford one place right now yet alone 2. Also it's nearly impossible for just one parent to be home to take care of both of our young children because Rayden and Shailyn are not allowed to even be in the same room as one another per doctor's orders. Every single day there is a chance Rayden could get sick. Or get another infection, possibly one that antibiotics might not be able to stop. Or viruses or the flu which turn deadly fast for immunodeficient kiddos. Every day is absolutely terrifying because germs, bacteria, viral infections... They are EVERY where. Please find it in your hearts to help us if you can. We very much need to be together at this scary time. Frank and I both deserve to spend every moment with our baby boy that we can. And if you absolutely can't donate that's ok. We understand and times are hard for most people, but if you can't donate we beg you to share Rayden's story. You can share his fb group page: Rayden Courage. You can also share his go fund me page https://www.gofundme.com/RaydenCourage or his Amazon registry which has many things the family needs as they have absolutely no income right now https://www.amazon.com/baby-reg/heather-darby-july-2018-seattle/3MYCJUDTPKCJG you can also share his donation account information (any branch of Wells Fargo Bank under the name Baby Rayden D). There are also a couple of physical locations you can donate that can be found throughout our updates on here. Wherever, whatever, whenever, you can all help is greatly appreciated. We also appreciate all the help we have received so far; we literally could not make it through all of this without all the blessings we have received. And of course all the love, prayers, positive vibes, support and encouragement you all provide. So even if you can only afford $2 or $5 that adds up. Also please share this everywhere. The more people that see this are the more people that can help us provide Rayden with everything he needs. Thank you so much for reading.
- Sandra Coates
- Margie Gannon