Monday, October 31, 2011

Behind the scenes of EB.

I can't believe EB Awareness Week is over already.  I sure dropped the ball this week, but NOT YOU GUYS!  You have all been so amazing in helping us spread the word about EB.  I hope that it doesn't end here and that you will all still continue to be advocates for Tripp and for all the people living with EB.  

 I haven't blogged about what's been going on with Tripp because it's been kind of rough around here, but I promise I will soon.  He had a really tough week in the beginning, but the past 2 days have been a little better.  But in honor of EB Awareness Week, I want to this post to focus on people who have helped us and other families through this difficult journey.

I want to take the time to recognize these people/foundations that sometimes go "unnoticed" in the EB world.  These are 3 women who are very dear to my heart- and I've only had the honor of meeting one of them, but one day I will meet the other two... I am positive.   These women may often get caught behind the scene, but without them... many EB families would not receive the support and care that they need and deserve.  These are people that deserve recognition for their hard work and dedication to the EB community.  

Mrs. Laurie Sterner and 
The Butterfly Fund:

Laurie Sterner~Founder, Executive Director
Allie Sterner~President
Michael Sterner~Vice President, Secretary

Board Members~ Steve Thrasher, Jim Fewell, Liana Fewell, Jannette Braa, Karen Battaglia, Claire Murray         

The Butterfly Fund is dedicated to helping EB families and now also families who have a child diagnosed with any serious life altering disease.
 100% of the proceeds of their events & donations go directly to family assistance in the form of financial aid,  food, housing, clothing & care.
Absolutely NO salaries are paid.
They are not federally funded or grant funded, so the amount of funds relies solely on donations from kind businesses and individuals. 
The Butterfly Fund does not discriminate.  Anyone and everyone who has a child with a serious illness may inquire with them. 

100% of the money they raise at their Annual event- The Butterfly Ball, gets allocated to as many families as there is money.  
They give every bit of the profit away.

This fund has reached out to us and is still reaching out to us on MANY occasions.  
Here are some examples of the services they have done:

-They provide Kicky Pants clothing for many families with EB (they've given Tripp MANY of his shirts- which are VERY expensive and SUPER awesome!)
-For 4 years, they have been paying a large share of the rent & living expenses for a local young man who has EB and they hold a special annual event just for him…sometimes more than once.
-They have bought much needed baby items for a family who's baby was born with MS
-Have given gift cards to a family whose baby was born with CP
-Sponsored a companion dog for a young girl with EB
-They bought a car and other items for a young single Mother whose son has EB
-Have given funds to approximately 15 families, with an array of catastrophic illnesses.
-They sponsored Aubrey’s 5K and Tim Ringgold’s various events and fundraisers
-They sponsored a young boy in Sonoma who was in a serious car accident/volunteered at his event
-Helped purchase bandages for Raul, who has EB and was living in an orphanage
-They sponsored a young man who is paralyzed and has brain damage
-They've helped a family financially who had a young boy with a brain infection
-They've donated Art supplies to Camp Wonder
-They honor 2 families every year at their annual Butterfly Ball – tell their story and if need be, help them financially.  These are families who have or had a child with a catastrophic illness or event.  

*1st Annual Butterfly Ball*
Cody Cordellos- a young man who has no family support live a better life.
The Shiery Family- 5 year old daughter, Rachel died from Brain Cancer

*2nd Annual Butterfly Ball*
The Spaulding Family: honored Garrett who has EB
Anim Vinson Family- Honored Her son William who has EB

*And this years honorees* 
The Pop Family who lost their daughter Elle last year to EB
And The Kragler Family whose newborn daughter's delivery at birth caused lack of oxygen and she now has CP. She is 3 years old and cannot walk or talk.

-They attend other fundraisers for children and support them financially
-They have helped the Cannell Family in the adoption of their 2 boys by raising awareness and funds.
-They raise awareness for EB any chance they get, including having a booth at very well attended Art shows and events.
-Mrs. Laurie's daughter, Allie owns a retail children’s store and she is constantly having items for sale that raise awareness for The Butterfly Fund and EB at the same time.
-They buy Christmas presents for families who have children with catastrophic illnesses that otherwise could not afford them!

Please visit their website and see how this family of angels work so hard to help other families who are in need.  They don't get enough recognition for what they do.  
Thank you Mrs. Laurie, Allie, Mr. Michael, and all who work hard to make this fund possible.

Mrs. Leslie Radar

I will never in my lifetime forget Leslie Radar.  
She was the first mom (and really the first "EB experienced" person) that I spoke with after Tripp was born.  Her daughter, Lauren lost her battle with Junctional EB at just 7 months.  She was my support when I received the news that Tripp was diagnosed with "Junctional" EB.  
She was so helpful, so brave, so understanding, and such a great listener.  
She helped me to get started and get on my feet with everything that I needed to properly care for Tripp. 
She is another amazing person that I have yet to meet face to face.
After her sweet daughter Lauren received her angel wings, Leslie started the New Family Advocate Program with DebRA.  She joined the DebRA Board of Directors and she organized the Wound Care Clearing House in her own home (but it is now being run through DebRA office).  Then, she joined Hollister Wound Care as the Coordinator of EB affairs.  Hollister is very compassionate and supporting of the EB community. They are always striving to make wound care products that improve quality of life by having comfortable dressing that are virtually pain free to remove.  Leslie makes personal visits to the homes of families with new EB babies.  She continues to help EB families with all wound care product questions, insurance issues, and tips and suggestions on how to use products.  She informs families of EB friendly shoes and clothing, and assists new families to network with other EB families and social media sites.

Leslie likes to be "behind the scenes."  But I think she deserves a tremendous amount of recognition.  There is NO better support than a mom who has been through the exact situation that you are in.  Leslie has dedicated her life to helping other EB families.  Thank God for people like her who use their experiences to help and educate others. 
Thank you, Leslie.  You're my hero. 

Ms. Geri Kelly-Mancuso

Geri is the EB Nurse Educator for DebRA of America.  
Ms. Geri will forever hold a very special place in my heart.  She was there from day one (she talked to my dad a lot in the beginning when I was in "shock,") but then she and I communicated on a regular basis.  She sent us out care-packages right away when Tripp was born.  She was always available when we needed her and she actually came to our house for the new patient visit when Tripp was about a month old (Mrs. Leslie Radar wasn't able to at the time) and spent the day with us, talking and sharing information that we needed to know.  Geri is essential in the EB community.  She is very knowledgable about EB and will work hard in every way possible to help in whatever way she can.  Whether it be communicating with doctors/patients across the world or just lending an ear when you've had one of "those" days.  She is amazing and will be a friend of mine for the rest of my life.  

Thank you to EVERYONE who works "behind the scene" or not for our family and all the EB families.  I know I speak for all of us when I say that we truly appreciate what you guys do.  
We are blessed to have you ALL in our lives.  


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