Donate to CaringBridge in the next 4 hours, 43 minutes and 35 seconds
and your donation will be matched, dollar for dollar, up to $30,000, thanks to a matching gift by former CaringBridge board members.
Bryce’s Story
Site created on July 2, 2019
Our son, Bryce, is a 16 year old boy that is in need of a liver transplant, in order to live. In October of 2018, we were told that Bryce was in end-stage liver failure, and, he had a year to three years left to live, without a liver transplant. Although he meets all needs to be put on the list, he has been turned down by both hospitals in MN (our home state) due to having autism. Also, it's not just Bryce with this liver disease. In fact, his twin brother, Eric, is about 4 years behind with liver failure, unless they find a way to reverse it. Up to this point, it has been said by doctors, that all of this was caused by a medication that led to "NASH". However, after our appointment yesterday, at the hospital that we are trying to get Brycey into, in Ohio, we've been told that this previous theory/diagnosis, isn't correct. The liver specialists at Cincinnati Children's Hospital, think that what caused his liver failure, is due to a certain type of genetic disorder. Bryce did a lot of blood work after the appointment, in order to try and find out what kind of genetic disorder it is. Now, we will be going back to Ohio in 2 to 3 weeks, for the start of a liver transplant evaluation. We're hoping and praying that they will not only find the cause of his liver failing, but, that they will take Bryce in as a patient for treatment, which will hopefully, get him onto the transplant list. Ironically (and also frustrating), the both of us have felt this was more of what the issue/cause has been all along, because of all of the other past medical issues that the boys have had. As many of you know, our family does not like to ask for help. We always try our best to take care of our family our own. However, we can not to do this with out your prayers and support. We will be traveling to Ohio 1 to 2 times a month (at least), along with still having to travel to and from the Mayo, for check-ups in between (not just for Bryce, but, Eric as well). On top of all this, we have no choice, but, to keep looking for someone, somewhere, to give Brycey a transplant. Just because Cincinnati Children's has shown interest, we cannot stop looking at different hospitals, until one of them says, "Yes, we will treat Bryce, and, perform the liver transplant, once we've received a viable donor.". Having autism should not be a reason that you are not given a chance to live, just like anyone and everyone else. Bryce has put so much work into doing everything that the doctors have asked. He leaves bandages on, gives endless amounts of blood for lab work, and, withstands all of testing they do. A year ago, this was not even possible for Bryce. But, with ABA and his hard work, along with family and school, he now does it with ease. Those of you who know him, can understand just how monumental and amazing, his progress has been, in such a short period of time. Bryce remains to be a happy and loving boy, without judgment to even those that judge him. Bryce still gives doctors and nurses high fives and hugs, and, always says "thank you", before leaving. This has been a long, hard road that our family has had to endure. If you know Bryce, he is a wild and active kid that never sleeps, and, never sits still! He absolutely loves his school in Brainerd, and, his friends there. However, in the last 9 months, Bryce's condition has become more visible/noticeable, which has been extremely painful to watch. But, even with having the choice to go to school or stay home, Bryce ALWAYS chooses school. Unfortunately, most days he cannot make it with out naps, and, comes home only to take even more naps. His body is much weaker, too. He gets aches and pains every day, all day long. Even with the warmer weather that we have had, he has a hard time keeping his body temperature up, so, now he brings his blanket(s) everywhere, since he always feels cold. Nowadays, Bryce has very little drive for doing the things he loves, such as, being outside, swimming, four wheeling, boating, and just spending time out on the lakes. Even when we can get him to take part in an activity, the amount of time he can enjoy himself is so short and is always followed by even more naps. We're both grateful, that Nikki has a full-time job that can go wherever the boys go. However, the hours will be cut back, due to the amount of care, and, the ongoing future appointments that we will need to be going to. As if we aren't already facing enough already, now Matt is on medical leave from the last knee infection, that is resulting in him having to have his left leg amputated on June 26, 2019. With Matt needing to be out of work until medically cleared, we will be in an even bigger financial need. Bryce and Eric will both be needing to go to Ohio about once a month, and the Mayo in Rochester every week. The cost of travel and hotels are starting to really add up, not to mention the medications that are not covered by his medical insurance. ONCE we find a hospital that agrees to give Bryce his transplant, and a donor liver becomes available, he will be in the hospital for about a month. After that, Bryce will then have to remain within a 10 mile radius for the following 2 to 3 months. This adds up to about 3 to 4 months with little to no income. If you are able to make a donation, we would greatly appreciate it. If not, it's okay, but, then please share this, to help spread awareness that all lives matter, and, that having autism should not prevent anyone from being able to have an organ transplant. Please share, and say prayers for Bryce, and, our family.
Update 12/6/19 we got the call from Bryces doctor that insurance has FINALLY APPROVED TRANSPLANT. We would like to thank everyone for the prayers, and support. Now we sit and wait for Bryce to have a match from a donnor. We ask that you dont only pray for Bryce but the person and their family, and all medical staff.
