How many of you know what 22Q is? How many of you know what dystonia is? Its likely that many of you only know these terms because you know me... or my son. Do you know what they mean? What kinds of symptoms you get with them? Again, probably only because you either follow my blog, know my family, or have these things in your own family.
How many of you know what cancer is? Probably every single one of you.
How many of you know what ALS is? Anyone who has had faceook in the last month must know due to the ice bucket challenge.
Dystonia is rare. I had no idea what it was until I was diagnosed, about 7 years ago. 22Q is more common than you would think but still, I didn't know what it was until my son was diagnosed about 16 months ago.
Cancer is something we hear about, we see and we've learned about through awareness and knowing people affected. It is so amazing how much support people get and how much awareness is out there to raise awareness for cancer and to find a cure. It was absolutely heart breaking to hear that a good friend of mine from high school had a little boy diagnosed with leukemia a day after his first birthday. "its just not fair" I thought. Why does she have to go through this? That little boy fought so hard and he beat cancers ass. He is now cancer free and had his port removed today. What an amazing little hero with strong and determined parents who have helped him get through this and support every kind of organization to help other children like theirs.
I have heard about and follow many kids on FB with different illnesses. It scared me when I got pregnant with Hailey. What if something is wrong? What if I eat something im not supposed to? Being pregnant is one of the most joyous but scariest times in your life. You really don't know how that child of yours will come into this world. Hailey was perfect. She was pink and chubby and on time. She came out crying and melted my heart from the very first second she was born. At that moment, I felt like the luckiest mother in this whole world.
When I found out I was pregnant with Cody, I immediately thought he would be strong and healthy too. After seeing my special baby girl with no health problems whatsoever, I was a little more laid back in my pregnancy. Although I had my DBS surgery prior to this pregnancy, I was not considered high risk like I was with Hailey. I followed the "rules" and did what I was supposed to in order to have a healthy baby. Nothing prepared me for the stress we have gone through with my little boy.
On our way to children's hospital in the ambulance with my 3 day old son, the first person I thought to contact was my friend Katie. I sent her a text and told her what was going on. My son did not have cancer like her little boy but he had something and I was so incredibly scared and she made me feel better, telling me that childrens is the best place to be with a sick child.
Over time, I realized Boston Children's hospital was going to help my Cody. After his diagnosis at 2 months old, I found support groups on 22Q and all those parents became family to me. I have met many parents and other children but the awarenss is not at all where it should be. Thank goodness for retired Red Sox pitcher Ryan Dempster and his organization The Dempster Family Foundation. Ryan has a daughter with 22Q. This has helped spread so much awareness but alot of people don't know what 22Q is when I tell them thats what Cody has.
Even more people don't know what dystonia is. I had several people tell me I was making it up and I had 6 shoulder surgeries before I was finally diagnosed by an amazing neurologist in Worcester. The dystonia medical research foundation is in the process of trying to get September to be dystonia awareness month.
So, I challenge all of you to not only do the ice bucket challenge for ALS but look into dystonia and look into 22Q. These are 2 very important organizations and mean alot to me. I am so glad that childhood cancer has so much awareness, but lets try to get the same amount of awareness for these two causes.
I need all the help I can get to spread the word about 22Q, find answers and figure out what is wrong with my baby boy and what is causing his discomfort, fussiness and vomiting. Thank you for reading, thank you for the love, the support, and thank you from the bottom of my heart, in advance for spreading awareness to help my family.
How many of you know what cancer is? Probably every single one of you.
How many of you know what ALS is? Anyone who has had faceook in the last month must know due to the ice bucket challenge.
Dystonia is rare. I had no idea what it was until I was diagnosed, about 7 years ago. 22Q is more common than you would think but still, I didn't know what it was until my son was diagnosed about 16 months ago.
Cancer is something we hear about, we see and we've learned about through awareness and knowing people affected. It is so amazing how much support people get and how much awareness is out there to raise awareness for cancer and to find a cure. It was absolutely heart breaking to hear that a good friend of mine from high school had a little boy diagnosed with leukemia a day after his first birthday. "its just not fair" I thought. Why does she have to go through this? That little boy fought so hard and he beat cancers ass. He is now cancer free and had his port removed today. What an amazing little hero with strong and determined parents who have helped him get through this and support every kind of organization to help other children like theirs.
I have heard about and follow many kids on FB with different illnesses. It scared me when I got pregnant with Hailey. What if something is wrong? What if I eat something im not supposed to? Being pregnant is one of the most joyous but scariest times in your life. You really don't know how that child of yours will come into this world. Hailey was perfect. She was pink and chubby and on time. She came out crying and melted my heart from the very first second she was born. At that moment, I felt like the luckiest mother in this whole world.
When I found out I was pregnant with Cody, I immediately thought he would be strong and healthy too. After seeing my special baby girl with no health problems whatsoever, I was a little more laid back in my pregnancy. Although I had my DBS surgery prior to this pregnancy, I was not considered high risk like I was with Hailey. I followed the "rules" and did what I was supposed to in order to have a healthy baby. Nothing prepared me for the stress we have gone through with my little boy.
On our way to children's hospital in the ambulance with my 3 day old son, the first person I thought to contact was my friend Katie. I sent her a text and told her what was going on. My son did not have cancer like her little boy but he had something and I was so incredibly scared and she made me feel better, telling me that childrens is the best place to be with a sick child.
Over time, I realized Boston Children's hospital was going to help my Cody. After his diagnosis at 2 months old, I found support groups on 22Q and all those parents became family to me. I have met many parents and other children but the awarenss is not at all where it should be. Thank goodness for retired Red Sox pitcher Ryan Dempster and his organization The Dempster Family Foundation. Ryan has a daughter with 22Q. This has helped spread so much awareness but alot of people don't know what 22Q is when I tell them thats what Cody has.
Even more people don't know what dystonia is. I had several people tell me I was making it up and I had 6 shoulder surgeries before I was finally diagnosed by an amazing neurologist in Worcester. The dystonia medical research foundation is in the process of trying to get September to be dystonia awareness month.
So, I challenge all of you to not only do the ice bucket challenge for ALS but look into dystonia and look into 22Q. These are 2 very important organizations and mean alot to me. I am so glad that childhood cancer has so much awareness, but lets try to get the same amount of awareness for these two causes.
I need all the help I can get to spread the word about 22Q, find answers and figure out what is wrong with my baby boy and what is causing his discomfort, fussiness and vomiting. Thank you for reading, thank you for the love, the support, and thank you from the bottom of my heart, in advance for spreading awareness to help my family.
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