From Brayden’s Mom:
Brayden was born on November 16, 2017
First Symptoms
On Tuesday Feb 20th, we took Brayden into the walk-in clinic thinking that he just had a cold and within 30 minutes we were sent by ambulance to the emergency room because he was in respiratory distress & his oxygen was at 74%. We were admitted to the hospital were they had him on oxygen and monitoring his breathing. He started to show some signs of improvement but the congestion sounded like it was starting to move into his chest. So, the doctor called for a chest x-ray. When we received the results they told us that his heart looked enlarged and that they wanted to do an echo just to make sure everything was ok. I will never forget the look on the doctors face when they came in and told us that the left part of Brayden’s heart was only functioning at 30% and that they did not have the resources needed to treat him and that we needed to go to Seattle Children’s Hospital sooner rather than later. They told us that the mercy flight was going to take us and to pack a bag because within the next hour we needed to leave. Myself and Brayden were transported to Seattle and admitted to the cardiac ICU. Zach, Camden & my mom Lori flew out Saturday morning. I have never felt so overwhelmed in my entire life, a few days before we were just treating him for a virus and now I was sitting down talking to a heart failure doctor! Thank god he has turned a corner and is recovering very well & the outcome will be just a few medications a couple times a day.
Feb 2018
Well, we thought we were on the right road and then this little one had different plans. He had an unresponsive episode yesterday evening that we thought was due to the high blood pressure medication Bidil they had him on, then today he had another more severe episode. They did an MRI and everything looked great. They did an EEG and we just met with the neurologist and he said there are no signs of a seizure which is wonderful. The neurologist did feel as though it could have been be a result of the enalaprel high blood pressure medicine. So this mama has demanded that they do not give him any more! We have a genetics doctor coming in to check him out to make sure the heart issue isn’t something bigger & they also did a ultrasound of the liver and spleen because they seems slightly enlarged. I will update as soon as I know more answers. Thank you everyone for your support, thoughts and prayers.
March 2018, Diagnosis
“We received some devastating news yesterday… we got Brayden’s bloodwork back that was done while we were in Seattle. Brayden has been diagnosed with GM-1 (infantile gangliosidosis) which is a is a lysosomal storage disorder & progressive neurological genetic disorder caused by the absence of a vital enzyme. This rare disease has already started to affect him and will continue to affect him by gradual loss of skills. He may never learn to sit up or crawl. He will have generalized poor muscle strength, demonstrate progressive inability to swallow and have difficulty breathing. Some children also have an enlarged heart, cardiomegaly which is why we were sent to Seattle in the first place. His future is grim and we have a battle to fight ahead. This disease will eventually cause him to lose muscle function, and mental function and sight, becoming mostly non-responsive to his environment. The average life expectancy is 3 years. We are in complete shock and we are still trying to process. I have been thinking about keeping a weekly journal and posting it for everyone to follow along with Brayden’s journey, we have had so much support and so many family and friends have contacted us wanting to know if we have any updates so i think this will be the best way to keep everyone up to date. Please keep this little boy in your thoughts and prayers no child should have to go through this but he is a fighter and i pray that we can beat the odds”
April 2018, First Birthday
One year ago today, we were having a nice family dinner preparing to welcome sweet Brayden to this world on Monday and this boy had his own plans. We went to bed a family of three and at 3am my water broke and then next time, we were all together we were a family of four. God must of known that we needed a special angel in our lives. I hope he continues to have a mind of his own and prove everyone wrong. I cannot believe he has brought so much joy to our world for a whole year it feels like yesterday i held him for the first time
Feb. 2, 2019, Moving On
Our little angel gained his wings this morning. We will miss him so much. we didn’t get the time that we thought we would but we will cherish the time we did. We love you Brayden
Thank You
We just want to say thank you to everyone for the outpouring of love and support at this time. We appreciate you! We are doing as good as we can and there is this weird sense of peace we have, we know he is comfortable and happy.