What I Want You to Know is a series of reader submissions. It is an attempt to allow people to tell their personal stories, in the hopes of bringing greater compassion to the unique issues each of us face. If you would like to submit a story to this series, click here. Today’s guest post is by Denise.
Having a family member diagnosed with an often fatal disease is life at its worst. Especially when that family member is 4 months old. My nephew was recently diagnosed with SMA type 1, the leading genetic cause of death in children, yet so few have heard of it. In very layman terms, it is a disease where a child appears to be born healthy, but parents start to notice something is wrong and things decline rapidly. Basically their bodies quit sending electrical and chemical messages to their muscle cells and the simple task of breathing is near impossible. In fact 90% of babies afflicted die before the age of 2, typically from respiratory issues. This disease is often misdiagnosed and misunderstood by many doctors, until it is too late. Time is of the essence, literally, and very specialized care is required for there to be any hope.
What I really want you to know is that every person that reaches out to the parents going through this is cherished. Every like on a FB page, every prayer or positive thought, every acknowledgement of what they are going through matters. It takes 1 second of your time, but makes all the difference when they are trying to cope. Seeing people like their favorite potato chip, but not taking two seconds to send a positive thought, can be deflating when you are just searching for hope. What I want you to know is how hard it is to be in that dark place where every step forward in care is followed by 2 steps back. Never knowing from minute to minute what will happen. It is understood that some people just can’t deal with the possibility of death, especially with a child. Imagine how hard that is for the parents? They have no choice but to face that possibility constantly. Just showing you care by acknowledging it is enough.
But what I want you to know most of all, is children affected by this disease have full mental capacity. Their bodies just don’t work. Those who think their parents are pro-longing their life for selfish reasons are completely wrong. I have heard many sad things where people assume ‘that is no life’ when they see these children who have managed to survive, hooked up to respiratory machines and chairs. These are amazing children and people who have overcome the greatest odds and I would imagine not one of them has a single regret. They have a lot to offer society, more than many of the people i see trudging through life taking everything for granted and miserable about what they don’t have. Just because someone needs a machine to survive or assistance in any way, does not mean they are a vegetable, mentally incapacitated, or in misery. Please stop making assumptions and just offer two words of kindness to those facing more than many of us do in our lifetimes. Please spread awareness about SMA so that people can educate themselves, fight for a cure (a very real possibility), and recognize all of the beautiful spirits in this world fighting so hard every day. There are some amazing children that have survived and continue to fight this fight with such strength. Some even write their own blogs! Google SMA or search the blog arena to be inspired! Thank you!
What I really want you to know is that every person that reaches out to the parents going through this is cherished. Every like on a FB page, every prayer or positive thought, every acknowledgement of what they are going through matters. It takes 1 second of your time, but makes all the difference when they are trying to cope. Seeing people like their favorite potato chip, but not taking two seconds to send a positive thought, can be deflating when you are just searching for hope. What I want you to know is how hard it is to be in that dark place where every step forward in care is followed by 2 steps back. Never knowing from minute to minute what will happen. It is understood that some people just can’t deal with the possibility of death, especially with a child. Imagine how hard that is for the parents? They have no choice but to face that possibility constantly. Just showing you care by acknowledging it is enough.
But what I want you to know most of all, is children affected by this disease have full mental capacity. Their bodies just don’t work. Those who think their parents are pro-longing their life for selfish reasons are completely wrong. I have heard many sad things where people assume ‘that is no life’ when they see these children who have managed to survive, hooked up to respiratory machines and chairs. These are amazing children and people who have overcome the greatest odds and I would imagine not one of them has a single regret. They have a lot to offer society, more than many of the people i see trudging through life taking everything for granted and miserable about what they don’t have. Just because someone needs a machine to survive or assistance in any way, does not mean they are a vegetable, mentally incapacitated, or in misery. Please stop making assumptions and just offer two words of kindness to those facing more than many of us do in our lifetimes. Please spread awareness about SMA so that people can educate themselves, fight for a cure (a very real possibility), and recognize all of the beautiful spirits in this world fighting so hard every day. There are some amazing children that have survived and continue to fight this fight with such strength. Some even write their own blogs! Google SMA or search the blog arena to be inspired! Thank you!
