Cousin of CF child -- new here!

[CaCasCuz]

Hi, my name is Jessica and I have a cousin with CF. Our family had never even heard of this disease until my little cousin Caleb was diagnosed when he was two. Now, after several family members have been tested, it has been discovered that apparently the gene runs in our family. Both my mother, aunt, and uncle are carriers, and I suspect my brother is as well.

The reason I am on this site is obviously to find out any information I can on Cystic Fibrosis, and hopefully be beneficial to my cousin. He is almost nine right now, and seems to be improving at times, while worsening at others. I'm currently a sophomore in college, and because I'm a first generation college student and (not to boast) probably the best able to research about the disease, I feel like its my responsibility to do so. I love him with all my heart, and hopefully I can improve his life somehow.

I hope to get to know everyone in here, and share information with you all. So, hello everyone!

 

[cfgirl2008]

if you have any questions you can email me at maxfieldtiff@gaggle.net. and im a sophomore in high school<img src="i/expressions/face-icon-small-happy.gif" border="0">.


tiffany 15 w/cf

 

[julie]

Is there anything specific that you have in mind right now. I know with your little cousin just being diagnosed, there is probably a lot you don't know or understand yet. Reading on this site at all the various posts will get you started, and hopefully prompt some more questions/curiosity from you. Please don't hesitate to ask about what you don't understand, and to guide your family to this site as well. Its a good place for his parents to talk to other parents who have children with CF.

Welcome,

 

[CaCasCuz]

Thanks for the response!

I forgot to explain the reason the rest of my family isn't researching or on this site. He is my mom's younger brother's son (my uncle's son), and his father (my uncle) died in 1997 in a car accident. He never knew he was a carrier for CF and likely had never even heard of it. My cousin was only about 2 when he died. Then, less than a year later, his mother died in another car accident, leaving him in the custody of his maternal grandparents.

After he got a little older, we started noticing that he was always sick, and it was hard for him to breathe. My grandparents were fighting the other set of grandparents for custody rights, but while things were tied up in court, we couldn't take him to the doctor. Again and again, his other relatives took him to a family doctor who diagnosed him repeatedly with a common cold, and then a year later as having severe asthma. Finally, my grandparents and mother took him to a university hospital, where they diagnosed him with CF and began his treatments. Now, he goes back for check ups, and his treatments are changed sometimes, but doctor visits are still in the hands of his relatives on his mother's side, so we have to push anything we want done for him through court to make them do it. Sometimes I worry that he is not getting the best treatment available for him, or they are not administering the treatments as prescribed.

Being from a small town, and from a family with hearts of gold but limited high school education, I feel like I should be the one looking for new information. For right now I have just been reading some former posts and checking out this website and others dealing with CF. I look forward to getting to know everyone in here!

-Jessica

 

[lflatford]

Jessica,

Wow, this little guy could surely use you on his side! It is very caring and kind of you to look after his health like you are. If you regularly read this forum you will gain a wealth of knowledge about CF. He is blessed to have you on his side. Congrats on being the first to go to college! I am the first to have graduated college in my family. And now I have my Masters degree and am a High School Teacher!

Welcome to the site!

 

[CaCasCuz]

<blockquote>Quote<br><hr><i>Originally posted by: <b>lflatford</b></i><br>Jessica,



Wow, this little guy could surely use you on his side! It is very caring and kind of you to look after his health like you are. If you regularly read this forum you will gain a wealth of knowledge about CF. He is blessed to have you on his side. Congrats on being the first to go to college! I am the first to have graduated college in my family. And now I have my Masters degree and am a High School Teacher!



Welcome to the site!<hr></blockquote>

Thank you so much! I have worked hard to achieve what I have...and most of my driving factor is to make my family proud!