September is leukodystrophy awareness month. 3 years ago leukodystrophy was a word we had never heard of and most people from what we found had also never heard of it. Our son Reed was later diagnosis with leukodystrophy: Vanishing White Matter Disease. Reed's his brain is killing him there is no cure no treatment but we have hope progress is being made with research and we are doing whatever we can to share Reed's story with the world to help us save our son to show the world his smile and that cures can happen.
The white matter in Reed is vanishing and as this happens Reed loses the communication with the rest of his body, Reed's brain will eventually cause is organs to stop functioning and will kill him. Vanishing White Matter is very rare Reed is less then an estimated one of just 200 in the world. We were told no cure no treatment at diagnosis but progress has been made in the last few years and real hope is there of clinical trials starting soon.
We have been notified of some huge movements within VWM Research, clinical trials will be starting very soon we know it. There have been positive treatments within mice models which means we are getting close to a treatment for VWM, fundraising is shifting now from research to clinical trials progress. This has finally allowed us to experience real true HOPE for the first time in three years. In the end, we will have a treatment for Vanishing White Matter Disease.
Within this, these clinical trials will come at a cost of nearly 2 million dollars fully funded. A cure is coming and we truly believe that God’s bigger plan for Reed is a part of this cure!
September is leukodystrophy awareness month please help us bring awareness to this disease by sharing and being apart of Reed's story. Be apart of curing an incurable disease