Madison May Draper

Our next featured VEPTR patient is Madison May Draper of Croghan, NY.  Madison was born August 14th, 1997 Madi  was one of the first 100 children in the VEPTR program her initial implant was done by Dr Campbell (currently of CHOP) and the late Dr Smith in San Antonio Texas in 1999 at the age of 2.  Following implants on both sides within 10 months of each other, and check up they felt strongly that Madi’s care could be transferred closer to home.  Madi’s care was originally transferred to Dr Morgan, and now under the care of Dr. Deeney  of Pittsburgh Children’s Hospital.  To date Madi has had 39 surgeries.

Dr. Deeney

Pittsburgh

Madi is just finishing her Freshman year at Beaver River Senior H.S. and is employed as a dance demonstrator at Rhonda’s Footeworks in Watertown, NY.  Beyond her passion for dance Madi has a passion for all things art, her real passion is voice.  When Madi grows up she would like to be either  a Lawyer specializing in advocacy for special needs children, or Art Therapist . Photography and dance being at the top of her list. And we appreciate her allowing us to share some of her photos with you. You can find some of Madi’s fancy Footeworks @ http://www.youtube.com/danzer81

We have reached the goal for our nonprofit mailing status. And are working hard on getting in our grant applications so that we can open up  the applications for family help.  We are now in the process of accepting donations for the foundations programs.  We will be posting the programs within the next few weeks for donors and families to get a overview of our foundation services.

The VEPTR Community has so many things in common with each other.  Our children are so different, yet so much the same.  We like to believe that they can accomplish so much, as much as they teach us anything is possible.

The Room to  Breathe Foundation as broken down The Vertical Expendable Titanium Rib expansions are into four categories9 to help explain the procedure and what the children go through easier to individuals outside the VEPTR community :

• VEPTR Freshmen: these children are more often than not infants or toddlers and receive expansions three  to four times a year.
• VEPTR Sophomore: these children are fairly young and receive expansions twice a year.
• VEPTR Junior: these children are commonly tweens and receive expansions once a year.
• VEPTR Senior: are VEPTR patients that are teens, and young adults, whose spines have stopped growing and they no longer undergo expansion. These VEPTR patients have yearly checkups including MRI, Cat Scan, Xrays and other medical testing to review patient implants.  Some of these Patients may need to eventually undergo a full spinal fusion.

We are holding our first $5.00 donation drive. How does it work?
The purpose of the drive is to raise funds for the Room to Breathe Foundation. If we all can spread the word and get one friend to donate five dollars to this worthy charity we are one step closer to fulfilling out goals.
Donations can be made online via paypal: donations@r2bfoundation.org

Check out our  facebook event: https://www.facebook.com/events/383261158361635/

Thank you everyone for all the positive feedback and emails. We are truly touched that the VEPTR community is responding so well to the foundation. We also would like to thank the parents who are making our location lists grow by leaps and bounds. If your childs Dr and Hospital is not listed please email us using the contact form. Our list is still being updated as now ortho doctors and teams are learning the procedures..

We are also looking for more featured children and stories as well as fundraiser ideas. If you are interested in getting involved please let us know.

Owen Sedey

Dr. Robert Campbell of  Children’s Hospital of Philadelphia

  Owen’s Story was  Submitted by: Sara Sedey

Owen was born in March of 2010, with a rare disease called Escobar Syndrome (Multiple Pterygium Syndrome) which is the genetic form of Arthrogryposis.  When we were first told of his diagnosis, we were informed that he has the lethal variant of Escobar Syndrome.  However, our doctors assured us that clinically, he was doing fine and that the only thing that could get in Owen’s way in the long run, were his lungs.  Some of the symptoms of Escobar Syndrome are contracted joints, webbing, scoliosis, and chest wall deformities.  Owen has all of the above.  His scoliosis was very severe and his chest wall was quite deformed. When Owen was less than a year, we noticed he wasn’t gaining enough weight despite having a healthy appetite.  Owen is a twin and his brother Caleb was gaining rapidly.  Our orthopedist at NYU put us in touch with Dr. Robert Campbell to discuss possible thoracic insufficiency.  We met with Dr. Campbell at Children’s Hospital of Philadelphia.  He ordered pulmonary function tests and a Dynamic MRI to assess Owen’s lung/chest condition.  While Owen’s lungs were functioning normally despite the scoliosis and chest wall deformities,  his lungs had no room to grow larger and eventually they would not be able to function at a normal capacity.  At that time, it was decided that Owen would have VEPTRs placed, however, we needed to get his weight up so that he could support the rods.  Owen had a g-tube inserted and in June of 2011, when he was at a healthy weight, Owen had his left VEPTR placed.  In October of 2011, he had his right VEPTR placed and his left VEPTR expanded.  Dr. Campbell was able to get a significant amount of space in Owen’s chest wall for lung growth and we are all hopeful that Owen’s lungs will grow now and use that space.  Owen is scheduled for another expansion on February 15, 2012.

Owen’s VEPTR rods potentially mean the difference between life and death for Owen.  And they certainly mean that he will lead a life that is far more active, far more similar to his brothers (Caleb and big brother Gavin) and far less debilitating than it would be if he couldn’t breathe.  We have hopes that Owen will be able to walk and be self-sufficient someday.  The VEPTR is life changing.  Dr. Campbell has given Owen’s lungs the chance to function like yours or mine. It’s nothing short of amazing.

Owen is approaching two.  He is happy.  He loves to dance and play with his brothers. He loves Elmo.  He loves music.  He makes us happy every single day and is an inspiration to our family.  He has come so far in so little time, I can only imagine what is ahead of him.

Owen’s Family Photo’s:

Owen and his brothers

The Room to Breathe Foundation is pleased to announce our current list of fundraisers. We are currently working on various fundraising projects.

We understand that fundraising for this type of organization will be hard and we are hard at work, looking into and getting prepared to send out our grant applications. However we have chosen three fundraisers that we thought would be success.

• Our first fundraiser is provided by restaurant.com. Donate $10 and get a $25 gift certificate to your choice of 18,000+ restaurants. Check the restaurants page for participating restaurants near you.
• Our second fundraiser that’s still in the starting stage is a green fundraiser. By recycling your old: cell phones, ink cartridges, and other items we can earn donations through a recycling company.
• Our third fundraiser is a special fundraiser. We would like to cordially invite everyone in the VEPTR community to submit their favorite family recipes for VEPTR Community Cookbook. This includes, our children, parents, grandparents, family members and our VEPTR Dr’s if they have time. We would also like to include some family stories as well as photos. This is the fundraiser we are really excited about and we hope you will be too…

For more information comments or questions feel free to contact us via phone 570-445-4450 or email admin@r2bfoundation.org

The Room to Breathe Foundation is currently seeking Volunteers to fill various positions within our organization. For more information see our Volunteer Positions page on our website to fill out an application or give us a call.

Upon approval of our 501c3 the Room to Breathe Foundation is in full swing to begin our first fundraising campaigns.  Shortly we will begin to begin our VEPTR awareness campaign as well. We are still looking to fill volunteer staff positions and feedback, suggestions and ideas for our awareness and fundraising campaigns.

Welcome to the Room to Breathe Foundation website. Here you will find a wealth of information regarding the foundation and the Vertical Expandable Titanium Rib Project.If you are new to the VEPTR™ community please view our VEPTR Information pages so you can learn more about the VEPTR procedures. If you are already familiar with our goals and plans please browse our website to see what our campaigns are that we are about to begin. Our main goal is to raise money to help offset traveling expenses for VEPTR families nationwide.

To view the entire message from the Room to Breathe Foundation click here.