Wednesday, March 30, 2011

Super Sweet Sophie - Walking for Sophie this time - CCFA



I know what you are thinking . . . Really, Laura - - - another walk?

I've struggled with this for a while. When Nate was diagnosed with type 1 diabetes the JDRF was there as soon as we got out of the hospital. The walk was just 2 weeks after his diagnosis and I needed to be around others . . . others that understood what I was feeling.

Less than a year later our Super Sweet Sophie was diagnosed with Ulcerative Colitis.   Another devastating blow to the Houston family. At that point I just picked up the pieces of my broken heart, smashed them back together and carried on.  What choice did I have?  My daughter needed me and I would not let her down. We started a treatment plan right away and Sophie almost immediately went into remission. I had heard that remission could last for months - even years and I was hopeful that would be the case for Sophie.

Sadly, that is not how it played out.  Sophie started having symptoms again in August so we started her back on steroids to give her some fast relief but again the relief would not last.  

The best way for me to describe Sophie's symptoms to you is for you to think about your little one having the worst stomach bug that they have ever had . . . EVER . . . with every symptom you can imagine. Vomiting, diarrhea, sever intestinal cramping, loss of appetite, lethargic, constant stomach pain . . . just to name a few off of the top of my head. And the worst part . . . it NEVER goes away. EVER.

Sophie's body weight has dropped from the 50th percentile down to the 5th percentile and she has repeatedly been forced to endure harsh rounds of steroids to help her little body from hurting so much.  Last week she made a wish . . . her wish was for her tummy not to hurt anymore.  What a heartbreaking wish for a 5 year old little girl.  Most girls her age are wishing for the latest Barbie doll or Disney DVD but Sophie just wants her UC to go away.

Heartbreaking.


Last year I threw myself into raising money for JDRF and with the help of my friends and family we were able to raise $12,000.

But what about Sophie?  She needs a cure too.

So, this year we are participating in the 2011 Take Steps for Crohn's and Colitis.  I am looking forward to raising money and awareness for Crohn's and Colitis but I am also looking forward to meeting families like ours living with UC in a small child.  

I don't have the energy or the friend base left after just raising so much for JDRF to raise $12,000 this year but I am thinking about alternating between the 2 charities each year.  We will still walk for each every year but maybe really fund-raise for just one a year.  Good grief . . . does anyone have any suggestions on balancing it all?  Do you have more than one charity that you raise funds for each year or do you switch every other year.  I would love to hear some thoughts/suggestions. 

I have found a wonderful online community for diabetes but I am lacking the UC support that I so desperately need. I'm hoping that becoming active in our local CCFA chapter will help me find what I am needing/lacking.

I'm aware that times are hard --- money is tight --- and oh yea . . . I was just begging you for money 6-months ago but if you would like to donate to Super Sweet Sophie our fund-raising page link is below and we would really appreciate any amount you can donate.  Also, even if you don't donate we would love for you to walk with us on May 14th --- There will be food, music, kid's activities and just an all around very family friendly event!!  It should be fun!  :)






15 comments:

Penny said...

Oh sweet Sophie! You are a strong women to raise money for two walks, and it's a shame you have to, I m sorry about that and I am so very sorry how it has affected Sophie's life.
We used to participate in Autism walks every year and raise money for that, then Type 1 came along and the autism fell by the wayside, cause frankly, everyone we knew had someone with autism in their family or their immediate family. It became the walk-du-jour sadly. So we stopped, and started on our Type 1 walks. I know Sophie's condition is different. I like the idea of alternating years for the walks and raising money. It's OK not to do it ALL, I learned that the hard way.
Love to you and your girls and Nate.

Anonymous said...

I would suggest that you fundraise for both walks every year. I don't believe our friends mind us asking for donations. They might not be able to give or give as much, but our friends understand why we are asking. And rest assured if we aren't asking them to support our worthy cause, someone else is asking them to support theirs. Sadly, many people think that if they can't give a big amount like $50 they decide not to give at all. Don't forget to let them know that every amount given adds up! So instead of one person being able to give $50 we need to ask 10 people to give $5! Go get 'em with your fundraising!

Reyna said...

Gosh Laura... I think the alternating each year is a good idea. Definitely participate in both though. You and the kids definitely need that sense of "community" with both chronic illnesses in your life.

Love to you and the Houston kiddos. Your story is inspirational and you show courage day-in and out in shouldering all that you do dear friend.

Shannon@ The New Normal Life said...

Laura I was in tears reading this. I cant tell you how it breaks my heart that you have to choose who to fundraise for! I know we all know this but sometimes life sucks! for you to be dealing with both chronic illnesses in your family is beyound stinky! You are and have been a true insperation to me! I agree doing the walk both years and putting all your efforts into fundraising one every other, but for sure have a place where people can donate to both each year so that those who can will.

NikDuck said...

I think alternating years for raising money is a great idea and definitely walking for both every year. The sense of comradery and knowing they are not the only ones who face these diseases is what matters to them. You are right, it takes so much energy to raise money and you have to do works for you right now.

Heidi / D-Tales said...

I agree with the others. Walking for both every year, but fundraising for only one and alternating the fundraising seems like a good way to balance it all. When the kids are older, they will realize that you didn't give preferential treatment to either.

I hope you find the camaraderie you seek!!! I know how vital it is!

Wendy said...

I think you're on the right path...it's hard to fundraise for everything!

As they grow up, they will each learn valuable lessons about supporting causes outside of their own.

I say go for it. And, guess what, if all you raise is $100 per walk...that's still $100 more than what the cause had before!

Alexis Nicole said...

I love you. And those kiddos. Youre outstandinig!

I say walk. Ask for money, maybe you can say hey if you were gonna donate $50 for JDRF can you split it between both? Not sure.

But we are here and we support you! and whatever you need from us we got your back!

Anonymous said...

Our 5 yr old daughter was diagnosed with T1 almost 6 months ago. Sometimes I think about how awful it would be if her younger son also developed an autoimmune disease. I don't know how we'd pay for it, let alone cope with it.

I am so so sorry that two of your beautiful children are dealing with such diseases. I am especially sorry about your daughter. At least diabetes can be managed with minimal suffering. The ulcerative colitis sounds just horrific to endure.

I am very impressed that you want to walk for both causes. You are a very dedicated person.

I also just wanted to mention that it is obvious that caring for your children is now a HUGE job so don't feel bad if you are not able to do all that you want to do regarding fund raising. You are doing a fantastic job even if you don't raise a dime.

Anonymous said...

I, of course, meant her younger BROTHER. LOL

Amy Lederer said...

Beautiful children, beautiful momma. Sometimes it's not about how much money, sometimes it's about how much heart. We walked with JDRF this past year, our first year since dx. I rememeber thinking, I just wanna walk to show Ryan love and meet other mommas/families. And effortlessly, we raised $2000. With all that's on your plate and your precious ones needing you, I say put it out there an only do what you can when you can. And don't ever forget to take care of you. Much love and prayers to you from Dallas.

Tracy (The Crazy Pancreas) said...

Love that you are doing this walk. This post brought me to tears too. Sophie really IS Super Sweet and she does need a cure too!

I am happy to help. :)

Love you, friend.

Hallie said...

Oh Laura... ((hugs)). I think that alternating is a great idea! And every penny counts. Its hard to fundraise over and over... I wish I could give you a big hug and take over for you! Wish we could be there- but we will be there in spirit! Love you!

Melissa said...

My SIL has ulcerative colitis. She is in her 30's. The treatment is a bit better now than it was when she was diagnosed as a small child.
I hope you find some good support through the walk. The DOC has been great for me since my DD was just under a year ago.

Jen said...

Oh Laura! My heart breaks for Sophie! Lucky for her, she has the most amazing mama ever! I like the idea of alternating years for each cause. I wish were closer..we would be walking with you guys and fundraising..for both causes! XO