Team DINO-MITO FIGHTERS Four years ago Ashlynn was anxiously awaiting the arrival of her little brother she was so excited to have a little one to love on you couldn’t contain her excitement. Every prenatal test showed that Sean going to be healthy, but God had another plan for us and when he arrived we found out that he wasn’t that healthy bundle of joy we expected. Sean’s health was a struggle from the beginning the first year being the most difficult. Then he got his feeding tube and we came up for air and things were looking pretty good but not great and that is when we found out bundle number 3 was on its way that fall. While we got the amazing home birth we had hoped for, Colton’s health problems appeared pretty early on. It took some digging but we finally figured out that they had Mitochondrial disease and it affects multiple organ systems. It is a progressive disease, with very little treatment options and there is no cure and the prognosis isn’t clear because there are so many different kinds and each child is affected differently. Sean’s mitochondrial disease includes dysautonomia, hypotonia, ataxia, dysphagia, developmental delays, severe persistent asthma, tracheobronchomalacia, central and obstructive apnea, motor and vocal tics, anemia, dysarthria, neuralgia, migraines, joint hypermobility, visual impairment, food allergies, periodic limb movement disorder, reflux, delayed gastric emptying, atypical autism with OCD and ADD traits, mild cerebral palsy, and he also has combined variable immune deficiency and a congenital heart defect that was repaired at 6 weeks of age. Sean wears continuous oxygen, he has a gtube that he gets a bolus 4 times a day and he requires frequent venting, he isn’t age appropriate, he is on 30 different medications, he wears SMOs, and he gets weekly subq infusions for his immune system and will be getting weekly IV infusions of fluid for his dysautonomia. He has heat intolerance so he can’t play outside like other little boys his age and sometimes even inside he has to wear a cooling vest because his body can’t regulate his body temperature. He has multiple specialist appointments and spends 7 hours a week in therapy. Colton’s mitochondrial disease includes dysautonomia, dysphagia, developmental delays, moderate persistent asthma, laryngomalacia, apnea, anemia, joint hypermobility, food allergies, reflux, delayed gastric emptying, failure to thrive and he also has a laryngeal cleft. Since the disease is progressive and Colton is younger then Sean we don’t know if Colton will start to experience the same symptoms as Sean or if he will take a different path. Colton has a gtube that we bolus every 2 hours and we also have to vent him, he isn’t age appropriate and uses sign language as his primary form of communication, he is on 9 medications and we will soon be adding more. He also has heat intolerance that causes him to “melt” when he is outside and he has to wear a cooling vest to help maintain his body temperature. He has multiple specialist appointments and spends 3 hours a week in therapy. We are often asked how we can smile when faced with such a reality. Well the answer is simple we have God and we have a wonderful and supportive network of family and friends that makes this journey just a little easier to bear. We have HOPE that there will be a CURE in Sean and Colton’s life time. And there is SO much joy that the boys give us from Sean telling us about every single thing there is to know about dinosaurs to Colton learning another sign from his favorite Rachel Coleman, and so much more. Daily they put a smile on our face and many of yours as well. Please join us as we walk in the UMDF Energy For Life Walkathon- Charlotte -on October 12th at Freedom Park. This is Dino-Mito Fighters first year walking as a team and we hope to help spread awareness and raise money to help fund research in finding a cure for Mitochondrial Disease. Join our team by using this link- energyforlifewalk.org/faf/search/searchTeamPart.asp?ievent=1066754&lis=1&kntae1066754=379413EBDDF749D79565014502675F31&team=5475285 You can join as a walker, a virtual walker, or just help by giving a small donation to help us reach our goal of $1000. Please feel free to pass along this note to gain even more "Team Dino-Mito Fighters" supporters. I feel like in time, we will beat this in numbers! For more updates on "Team Dino-Mito Fighters", you are welcome to join our facebook page https://facebook/groups/DinoMitoFighters/ Thank you! Hope to see you at the walk! The McDonalds
Posted on: Sun, 11 Aug 2013 03:39:46 +0000
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