Together we fight Together we live!
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I have started this GoFundMe for a close friend of mine & his family. Please read their story below & give if you can. Also, please blanket them & their children with prayer.
A family's desire to fight the challenges of Life Together!
Miranda and I have three children, Tanner who is 5 , Adalind who is 3, and Charlotte who was just born Nov 4th. Our children are our everything and for two of them, this year landed them a diagnosis that has changed our lives forever.
Our son Tanner was diagnosed with Duchenne’s Muscular Dystrophy earlier this year. Duchenne’s Muscular dystrophy is a muscle wasting disease where his muscles don’t repair themselves like normal due to a lack of dystrophin. This disease will cause him to lose his ability to walk by his teens and has a high mortality rate in the 20's. For treatment, we have to travel to see a number of doctors - neurologist, cardiologist, physical therapist, and genetic counselors. Currently there is no cure and the only treatment medicine wise is corticosteroids which come with their own list of negative side effects. A few weeks ago, Tanner received a good report at our MDA clinic visit over the prior visit meaning he is still on the uphill climb development wise (good news) and also means we get to go possibly 6 more months without needing to put him on the steroids for which we are very thankful.
Charlotte, our new infant daughter, has a critical congenital heart disease identified as Hypoplastic left heart syndrome. This essentially means that the left side of her heart doesn’t function. Leading up to her delivery, we were taking monthly visits to MUSC Charleston and bi-weekly trips to the cardiologist in Greenville to monitor her heart and size development. As planned, she was born at MUSC in Charleston so that they can do the first surgery within the first few days of her precious life. The first surgery called the Norwood procedure involves atrial septectomy and transection and ligation of the distal main pulmonary artery. She will be put on bypass during the surgery and be on a ventilator after the surgery. Following this surgery, her chest will be left open for about two days per standard procedure. She will be in the PCICU (pediatric cardiac intensive care unit), after her first surgery for 2-4 weeks then transition to the step-down unit after that if all goes well. Overall, we are expecting her to stay at MUSC for 2-3 months after she’s born. We will have to go back to MUSC at 3-4 months for a heart-Cath to check everything and plan the second open heart surgery called the bidirectional Glenn shunt. This procedure involves rerouting circulation such that the superior vena cava (SVC) drains into the right pulmonary artery. This will be performed around 5-6 months of life. One last surgery, performed at 3-4 years of age, the Fontan involves redirecting the blood from the Inferior Vena Cava to the lungs. At this point, the oxygen-poor blood from upper and lower body flows through the lungs without being pumped (driven only by the pressure that builds up in the veins). This corrects the hypoxia and leaves the single ventricle responsible only for supplying blood to the body. After the last surgery they will monitor her progress for the rest of her life as some patients still end up requiring heart transplant.
These are difficult diagnosis, we are believing in our Lord and Savior to provide for our needs. He has lifted us through so many things in our 7 years of marriage and proved time and time again that He is the great provider.
We are hoping to use the funding raised on this page to help with medical bills and to help support our extended stay at MUSC. Our hearts desire is to find a way to keep our family together in one location for as long as possible before I have to transition to driving back in forth each week for work. The longer we are able to stay together, the stronger we will be to fight the hurdles that have tried to latch on to our children.
A family's desire to fight the challenges of Life Together!
Miranda and I have three children, Tanner who is 5 , Adalind who is 3, and Charlotte who was just born Nov 4th. Our children are our everything and for two of them, this year landed them a diagnosis that has changed our lives forever.
Our son Tanner was diagnosed with Duchenne’s Muscular Dystrophy earlier this year. Duchenne’s Muscular dystrophy is a muscle wasting disease where his muscles don’t repair themselves like normal due to a lack of dystrophin. This disease will cause him to lose his ability to walk by his teens and has a high mortality rate in the 20's. For treatment, we have to travel to see a number of doctors - neurologist, cardiologist, physical therapist, and genetic counselors. Currently there is no cure and the only treatment medicine wise is corticosteroids which come with their own list of negative side effects. A few weeks ago, Tanner received a good report at our MDA clinic visit over the prior visit meaning he is still on the uphill climb development wise (good news) and also means we get to go possibly 6 more months without needing to put him on the steroids for which we are very thankful.
Charlotte, our new infant daughter, has a critical congenital heart disease identified as Hypoplastic left heart syndrome. This essentially means that the left side of her heart doesn’t function. Leading up to her delivery, we were taking monthly visits to MUSC Charleston and bi-weekly trips to the cardiologist in Greenville to monitor her heart and size development. As planned, she was born at MUSC in Charleston so that they can do the first surgery within the first few days of her precious life. The first surgery called the Norwood procedure involves atrial septectomy and transection and ligation of the distal main pulmonary artery. She will be put on bypass during the surgery and be on a ventilator after the surgery. Following this surgery, her chest will be left open for about two days per standard procedure. She will be in the PCICU (pediatric cardiac intensive care unit), after her first surgery for 2-4 weeks then transition to the step-down unit after that if all goes well. Overall, we are expecting her to stay at MUSC for 2-3 months after she’s born. We will have to go back to MUSC at 3-4 months for a heart-Cath to check everything and plan the second open heart surgery called the bidirectional Glenn shunt. This procedure involves rerouting circulation such that the superior vena cava (SVC) drains into the right pulmonary artery. This will be performed around 5-6 months of life. One last surgery, performed at 3-4 years of age, the Fontan involves redirecting the blood from the Inferior Vena Cava to the lungs. At this point, the oxygen-poor blood from upper and lower body flows through the lungs without being pumped (driven only by the pressure that builds up in the veins). This corrects the hypoxia and leaves the single ventricle responsible only for supplying blood to the body. After the last surgery they will monitor her progress for the rest of her life as some patients still end up requiring heart transplant.
These are difficult diagnosis, we are believing in our Lord and Savior to provide for our needs. He has lifted us through so many things in our 7 years of marriage and proved time and time again that He is the great provider.
We are hoping to use the funding raised on this page to help with medical bills and to help support our extended stay at MUSC. Our hearts desire is to find a way to keep our family together in one location for as long as possible before I have to transition to driving back in forth each week for work. The longer we are able to stay together, the stronger we will be to fight the hurdles that have tried to latch on to our children.
Organizer and beneficiary
Carla Bryan
Organizer
Greenwood, SC
Chris Simmons
Beneficiary