Wednesday, October 10, 2012

An introduction and a gentle plea . . .


I seem to have a hard time talking too much about my personal life here.  I suppose that's what a blog is supposed to be about but I always try to walk a line between what I "think" everyone wants to hear and what I may be feeling, struggling with, rejoicing in at any given time.  I'm trying to get a little better at it. . .

And along those lines, I have never used this blog to promote any certain cause but something has become a big part of my family's life in the past two years and I wanted to share it with you - as I KNOW it also a big part of many of your families as well.

Ironically enough, several years ago one of our kit members sent me a note asking for support for the Crohns and Colitis Foundation in honor of her young daughter who struggled with the disease.  I obliged and for many years have received emails and updates from the foundation.  Until that point, I had never heard of the disease.  Fast forward to 2010 and Crohns became something my entire family was talking about, researching and praying over as my sweet nephew was diagnosed with a severe case of the disease.

Noah and Hayden are only 3 months apart, and although we have always lived 12 hours away, they have always been close.  And as you can see, below, Hayden has NO personality. . .


Here's another photo taken this same year (2010) - the hair is getting longer, and longer and seems. . .


And here he is again that same year at Christmas - a Christmas he spent in the hospital trying to get over a particularly bad flare up (having lost a good bit of weight) . . . 


Good thing his cousin was there to entertain him . . .


And here he is now - still has the hair and still struggling to get this disease under control.  In the last few months he has started another treatment process that seems to be having some good results - we are all hopeful that this will put him in remission.  We so love him - he is such a positive kid to be around.  Always the jokester and always the one to make YOU feel better.
 
 

So here is my gentle plea!  My brother and my sister are running in the half marathon in Vegas in honor of Hayden the first of week of December and are trying to meet their sponsorship goal.  If you feel so led, you can click here to go to their pledge page and donate.  Any amount matters.  I now have the link on my sidebar as well.

Thanks!  And prayers to all who are dealing with this disease in their families as well -




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4 comments:

Lulu said...

My husband suffers from Colitis.. and I hope and pray for a cure constantly. Best of luck to him!! xoxo

aprilwallace1960 said...

Jenni, I have always believed our "gifts" and "talents" are from God and are intended to be used. "Fame" is an awesome gift which allows you to use your gifts to touch others lives. It is no mistake that you have the world wide following that you do or that this beautiful child is in your life and can benefit from that. Use this platform and any others that cross your path. Cross the line - tell your story...if you keep it to yourself it can not benefit anyone else. MUCH LOVE and PRAYERS for you and your family.

Unknown said...

1 - I so love your commitment to your personal style!

2. I have Crohns as well and I worked very hard with my doctor to find the right cocktail of meds to keep it in remission some of which I'm sure your nephew has tried. Humira, a drug used to treat arthritis has been the magic for me... I understand it's little used in some parts of the country for Crohns but if it hasn't already been discussed with his doctors his family might want to explore it with the medical professionals that are caring for him.

Anonymous said...

I have end-stage Crohn's and have spent much of my life in hospitals. I was told, at the time Crohn's was a relatively new diagnosis, that more than likely I wouldn't see my 18th birthday (I was 12 at the time and my father had just died of a long battle w/ cancer). 27 surgeries later and many struggles along the way, I've made it to middle age...45, and although my personal life has always been in shambles because of this disease, I managed to become a nurse and I currenlty work with special needs children. My family consists of mother and I and my 2 little dogs. There are many days where I felt like giving up and felt that no one could or would ever understand my struggles...even my ex-husband who left me because he couldn't cope. Then, in 2010, I discovered blogworld and it was the best dose of medicine and means of escape... those who inspire w/ a few daily words and photos on their blog can make such a difference to people like me....it means so much especially in my little corner of the world. Thank you for your blog, your inspiring style, and your efforts to help with the C.C.foundation. God Bless your family.
Gloria from Illinois