In Honor of Grant
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Hello, my name is Grant Rogers. I am 10 yrs old and I have a Primary Immune Deficiency (PID) specified as IGG Subclass Deficiency. I get sick very easily & it is really hard for me to get well. In this 7 yr process we have gotten a diagnosis but have struggled with getting the IVIG treatment that I so desperately need!
We were lucky enough to be put in contact with a GREAT Pediatric Hem/Onc here at Ft. Bragg, NC & he got the treatment for me! My hopes are to have my quality of life improved so that I can be a NORMAL 10 yr old boy!
Please read the latest in my journal, view my photos, and sign the guestbook. Your ENCOURAGING words will be appreciated GREATLY!
Before I turned 1 year old, I had reflux & I had to have tubes in my ears due to constant infections. It seemed that medication, tubes, etc. made no difference in my ability to fight off these infections. After my attempt to attend K-4 failed due to NUMEROUS illnesses, I had a second set of tubes, and had an adenoidectomy in hopes that this would alleviate the problem. Unfortunately this was not the case and the situation remained the same. So I was sent to an Allergist who initially discovered I had a low IgG level, along with several vaccinations that just did not take. I was revaccinated and that seemed to help (on the blood work results). I was also diagnosed with asthma. Even though we found out I had asthma and allergies, we enthusiastically prepared for K-5, but the excitement was very short lived. I was able to go to fewer days of school this year than the year before. We went through this year with very little progress made. I tried new allergy meds, & we tried different methods to manage my symptoms. Now we face the 1st grade. We push to get me to school as much as possible, we continued to work with my doctors, & continued to try new treatment regimens. Then in July 2007 I saw an immunologist in Minnesota who diagnosed me with an unspecified PID. Now we are at 2nd Grade, and I am still unable to regularly attend school. My Mom & Dad got really frustrated and concerned & through a Doctor that my Dad kept in touch with in Arkansas, we were referred to Dr. Bleesing at Cincinnati Children's Hospital who is working very hard with my parents to get me where I need to be as soon as possible. Not only is my body working overtime to fight infection (which it is not able to do), I struggle with exhaustion, sensory issues, some obsessive compulsive tendencies, & FRUSTRATION because I cannot do what my friends can.
Well due to the number of days & the socialization that I missed my parents have decided that I need to repeat the 2nd Grade. For a child who has a VERY difficult time adjusting to any type of change, this will be a challenge. The few friends that he has been able to make over the years will be in the 3rd grade.
Through this year we just do the best that we can & make a lot of visits to our pediatrician. This school year was more sucessful than others ONLY because I had a WONDERFUL caring teacher that worked so hard at keeping me up to speed. 3rd grade comes & goes with the same problems. I have learned that there is no one that can make it any better so I push extremely hard & learn to deal with my constant illnesses the best way I know how. Lots of school has been missed lots of holidays are spent with my family having to make things a little different because I am normally sick for all of that.
Then after having strep throat 2 times in a 3 month period of time I got very sick. My mom took me to the Dr. on October 18, 2010, & after getting a lot of blood work he set up a meeting for just my mom on that Friday to go over it all. The next thing I know is as soon as I get home she tells me that I will FINALLY be getting the IVIG treatment! Even after it was explained in detail to me about being in the hospital, getting an IV, side effects etc., all I could do is smile very big and say "you mean I will have a CHANCE to be a NORMAL kid?" My mom cried & said ABSOLUTELY!
So this new chapter to my life will begin Friday Oct. 29, 2010! My friends at school said that they felt bad for me but I quickly told them to PLEASE don't feel bad for me, this is going to be one of the best things that could happen to me!
Note from my mom:
I am SO blessed to have Grant in my life. He is the most caring & loving child that I have ever met. He is very empathetic & so genuine. When I told Grant the good news about the treatment he grabbed me and held me SO TIGHT! He fought back tears as he whispered "Thank you mom for LOVING me soo much and working for so many years to get this treatment for me!" "I can ALWAYS count on you!" WOW...that may be kind of hard to live up to, but I will give everything & more for my family! It is just those small little moments in time that you never want to forget!
Please follow along with this journey! It has been such an interesting, frustrating, & tearful, thing to go through. Grant does not (Thank God) have a terminal illness but what he has is something that there is a treatment for & hopefully a positive future for him. Without treatment his life could have been quite miserable & may have even been a shortened life due to complications. If that is not a good enough reason to fight for your child then I don't know what is!