Up In The Air... 501c3...

What a crazy and exciting time for BHB!! There are so many things in the works & up in the air... Lots of "maybes" too!

We MAY BE on the verge of something BIG!

We MAY BE on the verge of gaining a fiscal sponsor...

We MAY BE on our way to helping a TON of children!

What I know for sure...

Ben Has Blounts is applying for 501c3 Non Profit Status. This means that BHB will be ready to receive large donations that will be tax deductible for the donor; and will also be eligible to receive grants. For the past year; BHB has only been set up to recieve $5,000 in donations annually. That is all about to change...

I am currently seeking the help of a Fiscal Sponsor. That, would allow BHB to "piggy back" on another established 501c3; so that BHB can start accepting large donations now; rather than having to wait until all of the paperwork comes back.

I am also working on a few fundraisers to help me with the cost of applying for the 501c3. I am waiting on a few calls; and should have MOST of my questions answered by this time next week.

I am super energized, and highly motivated to get the ball rolling on so many projects that I have been dreaming about for a long time now... Finally, it is all coming together. Amazing things are happening; and I can not wait to let everyone know!

Stay tuned for the fundraisers! And, if you have any ideas you would like to share with me, I would LOVE to hear from YOU!

Email me at BenHasBlounts@gmail.com

Update: Shea's Story, Continued...

Everyone remembers Shea. Her sweet little baby face; and her warrior Momma Zoe... I am so thankful to have maintained contact with them throughout this past year; as they traveled on their journey through Blounts Disease.

Zoe is a member of the Ben Has Blounts Network on Facebook; and has kept us all updated on Shea's progress. The following, is what she wrote to share with all of you...

"After Shea's Diagnosis of Blount's in April of 2011, I have seen doctors in NYC and Denver; and then I went to a clinic for Shriner's Hospital in Denver, and Shea was accepted as a patient. After being seen by doctors there, I felt that Shriner's was the place that I felt most comfortable and confident that Shea would get the best treatment.

All the other doctors that saw Shea wanted to do surgery as the first option of treatment because they did not believe that bracing can be successful. As a parent, I did not want surgery to be the first option for treatment, since there is a window of opportunity for bracing I wanted that to be tried before surgery. With that being said the doctors at Shriner's wanted to keep a close eye on Shea.

Over the past year or so we have done x-ray's every six months. There is a period of development that happens from approximately age 12 months to 2 1/2 years, that a spontaneous correction can happen. When the doctors did not see that happening, bracing was suggested in July of 2012.

 Shea started wearing her KAFO braces in August of 2012 and has been such a “ROCK STAR” having to relearn to walk, run, and all the things that she was able to do before her braces. Now September, Shea is wearing her braces 23 hrs a day and walking, running, and climbing. Shea wears them at night for sleep in the locked position and free motion during the day. We have had her braces adjusted 2x and they are saying that they already see improvement in her legs."

Ben Had Blounts...

Hello World! This is post is SO long overdue! Every few months over the past year, I have sat down to write to you all; and the words have not found a way out... I am here though... So here we go...

What a crazy, wonderful, insightful year it has been! BHB has a community on Facebook that it growing everyday. I am still getting emails from families all over the world on a regular basis. And, although I LOVE hearing their stories, and meeting new people; it breaks my heart that our children have to endure the heartache along side us. Everyday I read a story that inspires me; and when a parent that I have maintained contact with for a long period, finally is able to start treatment for their child, I am overjoyed.

I can still remember the feelings of horror and disbelief we felt when Ben was diagnosed with Blounts Disease. I can still see those frightening images we came across while doing our research... Although those images are still out there, now, there are images of Ben. 

I can still remember when I was such an emotional wreck, grasping, and hoping, and reaching out on message boards just trying to find ONE person who could tell me what would happen to my precious boy. What does Ben's future hold? I still have the email from the first family who found my blog; and I can still remember the relief in knowing that we were not alone on this journey.  

I can still remember staying strong, and acting normal through countless doctor visits; and x rays, and castings. When really, I was terrified. Scared that Ben would see through my smiles and tickles, and we would both fall apart.

But...

I can also remember the first time I saw Ben walk with his feet pointed forward; and how accepting all of the kids at his preschool were; that they never, not once asked why Ben had on braces. I remember every email, every name, and every country of the people I have come in contact with.

And...

I remember going to our beloved Dr. Deering's office last Fall. Getting Ben's x rays back and seeing that he no longer was considered "Blounts"... He no longer needed the braces we had hated to love... And now I can say, "Ben Had Blounts".