Community Forum

Hayley's HopeMy daughter Hayley age 15 has Crohns Disease and is doing everything to help find a cure.  Since she was diagnosed when she was 9 we decided to try and make a difference. I am her Mom and was diagnosed with Crohns years ago, but never wanted to do anything about it until she was diagnosed.  That sounds bad, but I guess the good that  comes out of her diagnosis is that we are trying to make a difference.  Hayley has participated in many bowl a thons in OH and has raised a lot of money for CCFA.  We even testified at the State House in Columbus when she was 13 and helped pass the bathroom bill.  This year we decided to change things a little.  Instead of the bowl a thon Hayley hosted Hayleys Hope Skate a Thon in OH.  We knew we could raise more money  with the support of our family and friends we did.  Thanks to our family, they donated all their time and made all the food for the event.  We also received many donations of products and gift certificates to raffle off almost 30 baskets valued at $40 -  $150 each.  We sold tickets for $1 each or 6 for $5.  We a 50/50 raffle, sold Hayleys Hope tshirts, which were donated by a friend who own a printing company, we also had a silent auction of items that were also donated.  Hayleys softball team boosters club paid for the rental of the skating rink, which was wonderful. We made $9500 to date for CCFA to help find a cure!  We are sooooo excited and cant wait for next year!  We are pumped for the Take Step Walk in OH.  Hayley was chosen to be the Honored Hero!  We are so proud.  I guess I just wanted to let people know that we are hoping to make a difference and hope many of you from Cental Ohio will come to the Take Steps Walk.  Please contact me if you need info!  Take care!

 Reply posted for fewmccullough.

The bathroom bill is for people with IBD.  If there is not a public restroom they have to let you use the employee restroom.  That is important.  Some places will not let you use their restroom but with this bill they have too.  We passed the bill for Ohio!  I don't know what other States have passed the bill, but I feel it is important to educate people and let them know that some people are honest and just really need to use a bathroom.  Alot of people don't even know about the bill so it is up to us to educate them.  Are you from Ohio?  I feel so bad for your daughter.  We have been there. It is hard to tell a child to hold it even if they don't have IBD problems, let alone if they do have IBD.  It is so important to educate.  My daughter did a year long project for school and it was on Crohn's Disease.  She taught kids in her high school what it is like to have Crohn's.  She was not as talkative about it until the last few years.  Now all she wants to do is educate and talk Poo!  She is not afraid to let to tell anyone who will listen about Crohn's.  I think the kids she spoke to really listened and learned more about it.  We have to let our kids know that they need to be vocal and not hide the disease they have.  Hayley wants Crohn's to be as well known as cancer or diabetes.  She is a huge advocate and I am so proud of her.  Thank you for your kind words and keep supporting you kid and let her know that there are people who want to help and want to make a difference.  The younger they learn to be proactive the more we will be vocal and be heard.  Take care and let me  know if there is anything we can do to help.  If you need anything let me know!

 Reply posted for hayleybug33.

I just want you and Haley to know how wonderful we think it is that you are trying to help with this terrible desease. My 6 year old daughter has severe Crohn's which is not at all under control. I will try and help with financial support. My question to you is what is the bathroom bill that you helped to pass. I hope it is what I think it is. Poor Faith has had accidents in public and is so embarrassed. We home school her and hope to continue to.

Thanks for your response

Faiths Mom

 Reply posted for hayleybug33.

Hi again.  There are two walks in MI this year.  One at camp Dearborn in the middle of May and one on the Detroit River on June 27.  I am taking part in the June one.  I am excited about it.  We have heard about Camp Oasis but I am not sure if my son will go this year.  He is 7 which is the youngest age allowed to go but he has never slept away from home so I am thinking that next year may be better for him.  I think Camp Oasis is in early July for Michigan kids.  Do you have one in Ohio or are Ohio area kids participants in the Michigan camp?  I know they combine some states but I am not that familiar with which ones.  I think that is great that your daughter will be honored at the Ohio take steps walk.  Let me know how it goes and I will let you know how our walk goes.  It is the first time they have 2 walks in MI, so I think it will be interesting.  The Detroit River one is new.  Take care and I'll keep in touch.

 Reply posted for loving mother.

Thank you for your kind words!  Hope you have great success with the walk.  Ours is May 3.  We are so excited that Hayley was chosen the Honored Hero.  She really wants to find a cure!  Have you signed your son up for Camp Oasis?  It is in MI.  I am not sure the age range, but Hayley had such a great time last year!  She made so many friends.  Hope your son is doing well and keeps healthy.  Take care and let me know how you do at the walk!

 Reply posted for hayleybug33.

Hello,

I do not live in Ohio but was so moved by your post I wanted to respond.  My son was diagnosed in October of 2008 with Crohns.  He is 7.  Right away I wanted to help raise money for research and a cure.  I joined CCFA and my family and friends will be joining me this year for our first Take Steps Walk.  I live in Michigan.  Congrats on your Skate a thon.............the amount of money your raised is outstanding.  Take care and God Bless.