Wednesday, September 3, 2014

Ice bucket Challenge CCFA TAKE STEPS

So I have been contemplating this topic for several nights.  To the point of tears and just praying for my brain to shut of so I could sleep and not think of it anymore.  Last night was the worst.  So I am a Mormon and we rely heavily on the Holy Spirit to guide us and last night I felt it so strongly that I needed to do this.

So first of all, let me say to those of you that have supported us through the years of these fundraisers, THANK YOU!  We've come a long way, CCFA research has come a long way.  Because of your support there are great meds, some of which Isabella is taking, to stay healthy and strong.

NOW my soap box, Momma Bear side.  I feel cheated.  Defeated, maybe a little betrayed.  Why?  you ask.  Because I have been trying to raise money for Isabella's walk for several months and we are just inching along, not near our goal.  Which isn't out of reach.  Then last month there was an explosion of donations or supposed donations made to ALS through the ice bucket challenge.  Time after time I would see family and friends posting their videos of their 'challenge' on Facebook.  Those family and friends that I have repeatedly but not singled out asked for donations for Isabella's walk.  Who have not.  Why?  I don't know.  Some I know were for personal family member tributes but some?  Was it because someone challenged you?  Do I need to challenge you to dump ice water on your heads and call you by name to get money from you? 

Now before you get all defensive.  Some I know did donate, and some just did the ice bucket to raise awareness.  I understand the  difference.  So for those of you who donated to that but repeatedly didn't for B?  That breaks my heart.  I want to say how dare you and that's not fair and kick and scream to get your attention to help my beautiful daughter.  BUT I won't and it probably wouldn't help if I did.

So here it is 11 days before the walk.  We need your help.  So let me put it to you straight and maybe add a little reality to the situation.  Isabella is 12.  She was diagnosed at 9 with Ulcerative Colitis which is a disease that eats away at your Colon, leaving ulcers, bleeding ones.  She was 8 and having symptoms.  NOW at 12 she is better but we are always optimistically cautious.  We know what could happen, we've seen it with friends.  The meds could stop working, we could be worse again.  Let me take you through a day for her.  She gets up, usually the first one, goes potty does her thing, before we leave she goes potty,  before we go anywhere she goes potty.  If we are at the pool and has to go potty we come home to go potty because face it taking a wet suit on and off all the time is a mess and then it needs to be adjusted.  If we are traveling she tells us in plenty of time she has to go potty.  BUT if she is sick, like last week, she had strep, she got an infection which made her miss the potty, STUPID DISEASE.  So she takes meds at night every night, she potties a lot!  Then on nurse day she drinks tons of water, like a gallon,  she comes home after church, takes a shower, puts meds on her arms, we wrap her arms in plastic wrap.  She worries, gets anxious,she knows there are probably going to be lots of sticks.  In 14 months, we've only had 1 successful stick!  Then the IV drugs are administered.  That is what keeps her healthy.  So if you think she doesn't need your financial support she does.  If you think looking at her all is well, well of course she has awesome drugs.  But wouldn't you want you kids to NOT have to take drugs if they could.  I sure wish mine could.  This is her life and it will be unless we get a cure!

SO now my CHALLENGE to all of you, donate!  Donate what you can, if you donated to ALS then donate half of that amount to Isabella.  really I'm not asking a lot.  Just be fair, don't forget her.  You see her at school, at soccer, at church.  She looks great but its because of the meds.  We need a cure so she doesn't need to be on the meds forever. 

So here is the link.  You can donate to Isabella Fratangelo or 'The B Team'

Now I'm done.