"Bounce For Blounts"...

I have been SO excited to share this news with everyone... and I'm done keeping it to myself! BHB is going to have its first official event! I don't have ALL of the details worked out... but here's what I do have:

~ June 4th, 2011

~Longs Park in Grand Junction Colorado from 11-2p.m.

~ So far, I have bump& jumps, courtesy of "Jump Time Colorado"

~ 'Whaz Up Dawg' hot dog stand will be there

~ Face painting, and plenty of other things for children to take part in. The cost for the bump & jump will be per family, not per child. I will make a formal posting as soon as I hear back from a few more people.... I think its going to be GREAT! I hope to see everyone there!

Shea's Story...

Recently I was contacted by a mother named Zoe, who lives here in Colorado, where I also live. Her daughter Shea, has just been diagnosed with Infantile Blounts Disease. Zoe is doing a great job at gathering information, so that she can be the best advocate for Shea. She is also brave enough to share Shea's Story with all of us... This is what Zoe had to say...



Beautiful Shea...

 Shea (18 months) was diagnosed with Blount's Disease (Tibia Vara) in April of 2011.  We are trying to find the best answer with the least amount of risk for her treatment.  One of her doctors is suggesting surgery but we are getting some other opinions to see if bracing might be an option.  Shea has a great spirit and is an amazing lil girl with lots of energy and love to share with the world. Both of Shea's legs are curved the angle is R 20* L 30*.  She started to walk at 91/2 months and has been in the 97% for height since she was born but she is not overweight.  We tried the Dennis Brown bar for 6 months after being informed she had Internal Tibial Torsion.  Due to the fact that she was so young Blount's could not be verified.  Shea has had no improvement, and now has the diagnosis of Blount's.  We want our lil girl to get a chance to lead a normal active life and are prepared to do anything and everything to make that happen.  I want to thank Kira for starting this blog to open people's eyes to this rare condition and having a great support system available for the families that are dealing with this situation. ~




Shea Playing... if you look closely, you can see the
 signs of Blounts Disease



I am so happy that BHB is a place where our stories can be heard. There are many children who are struggling with this disease. The more we share, the more families we can reach & support.

Thank you

Zoe, for being a voice

for Shea; you are an inspiration!

You can view a video of Shea on BHB's YouTube Channel...

http://www.youtube.com/watch?v=qXmaa7ZUu6c

Unique Streaks Raffle...

This particular raffle is for Western CO residents only, unless you are planning a trip to the Grand Valley! I have a few more raffles in the works.... so stay tuned for those, some of them will be better suited for people all over the U.S.

Remember that all of the money going towards these raffles will be used to pay the legal fees for BHB to turn into a non profit! Then the REAL fundraising will begin! Thank you all so much for your support these past few months; and a special thank you to the families I have met who are struggling with Blounts Disease. These families have let me in, shared their experiences with me; and are my motivation to keep moving forward with BHB.

Now Let's Help Some Kids!!!

April Updates...

There is so much going on with BHB this month! I haven't blogged in a while; but I am working on a few things that I hope will give some insight and helpful information to everyone soon.

I did want to let you know the latest happenings with BHB becoming a non-profit, and all of the fundraising I have been trying to do...

Recently, I was interviewed by the Daily Sentinel, which is the local newspaper in my community. There is already a story online; and there will be another story next week, in the actual paper. A photographer came out to the house today to take pictures. Ben did great! Blew bubbles, and splashed us with the bottle! Then, of course, I turned the camera on him!



Ben & Dean Humphrey from the Daily Sentinel

The Basketball Raffle concluded yesterday. It didn't go as well as planned; but I am going to stay steadfast & keep having raffles! The next one is for gift certificates to a local salon; I think it will go over pretty well!

I am also working on an event that will be called "Bounce for Blounts" that will be held later this summer. I am working with a lot of local vendors, and some friends.... I am REALLY excited! I will keep everyone updated when I have all of the details!

Please know that I am working as hard as I can, to get BHB up & running! I am SO eager to start really helping the families who find me. We need treatment for our kids! Treatment that works, and doctors who know what they are doing, and how to treat Blounts Disease. It breaks my heart, when I hear that a family is unable to find the support of physicians because their child doesn't meet the "stereo-typical" standards that were brought forth years ago!! Blounts Disease affects kids of ALL races, ALL backgrounds, ALL body types...

I want to hear from you! Who is your child's Doctor? Are you satisfied with the level of care you are getting? Would you recommend the doctor to anyone else struggling with Blounts?

Email me @ BenHasBlounts@gmail.com

Ben Has Blounts 'Network'....

A few weeks ago, I set up a Facebook page for BHB. If you haven't seen it; you definately should check it out! I haven't found another forum where as parents we can get together; ask questions; and share our stories. I honestly believe that through eachother is how we will learn more about this disease, and the treatments offered.

So many times, as parents we feel that we aren't doing enough... If we only did "this" better. Or tried harder. Or found the right information... Give yourself a pep talk! You do the best you can! If you have an idea or a question that you need to have answered, why not try a forum specifically for those who are struggling with Blounts? I can tell you, that when you are able to talk with another person who is going through the same thing it is such a comfort!

If you or someone you know has questions about Blounts Disease, I want to hear from you!

Email me @ BenHasBlounts@gmail.com

Or come join the 'Network' on Facebook!

http://www.facebook.com/?ref=home#!/home.php?sk=group_190868670933387&ap=1

Basketball Skills Session Raffle!!

So happy to have this first raffle going! A special "thank you" to Lindsay at http://www.grandvalleymomsformoms.com/, and her husband for donating these services.

 This particular raffle is for Western CO residents only, unless you are planning a trip to the Grand Valley! I have a few more raffles in the works.... so stay tuned for those, some of them will be better suited for people all over the U.S.

Remember that all of the money going towards these raffles will be used to pay the legal fees for BHB to turn into a non profit! Then the REAL fundraising will begin! Thank you all so much for your support these past few months; and a special thank you to the families I have met who are struggling with Blounts Disease. These families have let me in, shared their experiences with me; and are my motivation to keep moving forward with BHB.

Now Let's Help Some Kids!!!

Going All The Way...

The feeling I've been having of wanting to do more for  those affected by Blounts Disease has not gone away. If anything, it is growing stronger by the day! Last week I talked with a wonderful woman at a small law firm in California. I'm pretty sure I am going to be using their services to turn BHB into a Non Profit.

Its very exciting, and very scary at the same time. It is a big commitment... But I really feel that it is an important step that I need to take to really try and make a difference.

First things first... I have to have a "board"... 2-3 people; who I can trust to take on some responsibility and help me run BHB. At this stage in the game, it would require a few hours a week; getting on forums, raising money, sharing ideas, etc... It would be helpful to have at least one person on the team with experience in accounting.

I also need to pay the lawyers. Right now I am trying to raise $500 to make the first payment to them. The cost will be around $2500 total. After considering it, I think this is well worth the money. They take care of all of the filing, everything legal; so that BHB can be up & running as quickly as possible! It's really important to me that it is done quickly... Blounts Disease can worsen so fast, and I want to get to these kids before surgery is their only option.

So... I NEED YOUR HELP! If you have ANY ideas on how to raise money, or if you need help promoting a fundraiser for BHB... Please let me know! OR if you are interested on being a board member... please email me at BenHasBlounts@gmail.com

Thank you all SO much for all of your support thus far.... It's only the beginning!!