Team Camden Auction

Last January, Camden was diagnosed with a very aggression, progressive muscle disease thought to be a rare form of muscular dystrophy. Since then we have been traveling all over Texas seeing multiple pediatric specialists for Camden’s care. He currently works with a physical therapist twice a week, sees a neuromuscular specialist, a cardiologist, a pulmonologist, a rheumatologist and starting next month an endocrinologist. His has undergone extensive testing from MRIs to numerous lab, xrays, DNA testing, EKG, Echocardiogram and physical exams. He is currently undergoing monthly IVIG infusions and on a very high dosage of daily steroids and another medication to increase his desire to eat. Our two main teams are located in Dallas and Austin after fighting to remove him from the first team that we could not agree with in San Antonio. His disease has left him disabled and very weak and is weakening his lungs and heart as well as his physical strength. It causes him to not be able to run, jump, ride a bike, climb stairs, walk for over 15 minutes and remain greatly fatigued. Eventually he will lose the ability to walk, to eat on his own and to breath on his own. Lifespan is limited to earlier 20s if even that. Most patients die due to respiratory failure or heart failure. We have recently discovered his heart is already involved which has been extremely terrifying, especially at the age of 7.

During the last month our two teams have been talking about Camden’s rare case and the fact that the cause of his disease has been extremely difficult to pinpoint. They sent his case to a specialist in DC at NIH who deals with very rare muscle disease. After reviewing his case they all agreed he was a prime candidate for testing and research studies at NIH. They are sending him there in Maryland March 29-April 4 for a week of very extensive testing. They are kind enough to be covering the costs of travel for Camden and one parent, as well as lodging. Meals are not covered though and we would really like to have Camden’s Dad be able to fly there with Camden and I. We aren’t sure what we will find through testing there and have been warned a very aggressive treatment could be put into place that could include chemotherapy and much more. He is thought to possible have a severe autoimmune disease called juvenile polymyositis along with the muscular dystrophy that could be the reason he has progressed so rapidly within a year. This type of autoimmune disease is highly linked with cancer as well. There is so much going on in our minds and hearts and we feel it would be wise if both parents could be with Camden during this very important medical week.

We appreciate any donations and every single kind thought and prayer. This is a tough journey but Camden has one of the STRONGEST souls and is a warrior. He has endured so much already but never loses that sweet spirit or smile. Thank you all and God Bless!

– Lindsey McAlpine

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