Let's make Kyla's 19 Birthday unforgettable!

Kyla is an amazing young local teen who is currently waiting for a heart transplant. i met Kyla's mother many years ago through a mutual friend, and have been following Kyla's story ever since she first became sick. What was thought to be pneumonia in an otherwise healthy teen, turned out to be much more. When the pneumonia didn't get better, she underwent many more tests and was eventually diagnosed with heart failure caused by the genetic disease Emery Dreifuss Muscular Dystrophy. 

 She was just turning 18 and ready to start her life, when her entire world was turned upside down

You can follow  Kyla's Journey on her Facebook page. Kyla's Punk Pill-grimage.
Kyla is a huge fan of RuPaul’s Drag Race,  so when she first became hospitalized, she made a poster asking any and all drag queens to come visit her at Duke University Hospital, where she hopes to receive a new heart.  The story got national attention. :)

Kyla has spent the last year in and out of the hospital. She is officially on the transplant list and has spent the last 4 months hospitalized and undergoing several procedures to keep her alive until a suitable heart can be found.  In eight days, on October 20, Kyla will turn 19 years old.  They are planning a birthday celebration (with plenty of purple!)  at Duke hospital.

Kyla loves mail and welcomes birthday wishes. If you’d like to send her something, her mailing address here at the PCICU is: 

Kyla Rose Robbins

Duke University Hospital 
Unit 4200
2301 Erwin Rd.
Durham, NC 27710

Kyla has purple hair and also loves all things purple.  You can show your support for her by posting a picture of yourself wearing purple on instagram with the hashtag #purpleforkyla

There is also a gofundme set up by a family friend to help with every day expenses, while she is hospitalized. You can read more about her journey and the updates by her mother on the gofundmepage.

Lets flood the hospital with cards and gifts to make Kyla's Birthday unforgettable!! Please share this post and help me spread the word! 

Orion's Peace Camp & Learning Center: a Global Movement

i know i've posted about Orion Strong a few times before. Orion is the son of an online friend who was diagnosed with AML cancer in 2013. On November 10, 2014,  Orion Strong, 16 yrs old, got his angel wings. His grandparents have started a kickstarter to help create Peace camps in his honor. Please watch the video,  visit the kickstarter page, donate if you can and share. 

<3 span="">

 As Orion liked to say, "Together we can make a difference." Thanks for being the change you want to see in this world. 

View the Kickstarter campaign here.
You can also visit the Hope for Orion fb page to read more of Orion's story.

St. Jude Trike-A-Thon

My friend's daughter is participating in the St. Jude's Trike-a-thon with her Pre-K class at Busy Bee Early Learning Center.  Erin's goal is to raise $100 and she is already at $55!  Click here to donate!

Help raise funds for St. Jude!

How your donation helps:

• No family ever pays St. Jude for anything.
• St. Jude continues to improve the treatment of childhood cancer and other deadly diseases.
• For every child treated at St. Jude, thousands more are saved worldwide through St. Jude discoveries.

Thanks for your support!

Rebuild 4 Reid fundraiser- Another local house fire.

Tweet

So unbelievably sad!!!! Can't believe that this has happened to friends / neighbors in our little community again. We've known these folks for a good number of years and have been given produce and other help from Joe over the years.  The Reids' tragically lost their daughter, Lisa, in February in a car crash and dropped their home owners insurance to pay for her funeral, and then their home just burned to the ground on Thanksgiving Eve. They lost everything including their vehicles, which were parked near the home.

You can view the story below on our local news channel.
http://www.wsls.com/story/24116277/local-family-dealt-another-blow-community-rallying-to-support-them?autoStart=true&topVideoCatNo=default&clipId=9591054

 Kenan will be unleashing his marble skills again over the next few weeks to raise as much $ as possible for them. i will share links to the auctions once they are posted. 

Here's the donation fund link, please donate if you can. These folks have lost so much.  http://www.youcaring.com/help-a-neighbor/rebuild-4-reid-fundraiser/111992

This was taken from the Rebuild 4 Reid Fundraiser page. i do not know who took the photo. 

The dawn before Thanksgiving the house where Joe, Ella and their son Joel were that night suddenly caught fire. The house filled with smoke & moments later the whole back of the house was up in flames. This year has brought many hardships for the Reid family. Lisa , the eldest daughter died in a car wreck back in February. They have 3 grandchildren 11 year old grandson who lives in Floyd & 8 year old twin grandchildren from Roanoke. All made many memories in this home making it hard for them all. The Reid's walked out in nothing but their bed clothes and bare feet. The fire took both their vehicles & all personal items including all the late daughter's personal belongings that were to be passed down to her son at a later time. Their son Joel, was a 2003 graduate of Floyd Co. High. Please reach out to this family anything we can do for them will make a world of difference and give them a boost to rebuild a home for them. 
- See more at:  http://www.youcaring.com/help-a-neighbor/rebuild-4-reid-fundraiser/111992

When we lost our home in Jan, the love and support we received was so incredibly important in keeping our spirits up. We were so incredibly lucky that we were all okay, that we had an amazing community rallying behind us and that we were insured! My heart truly breaks for this family.  i can't even imagine what they are going though. Please share the link and help spread their story!

Orion Strong Leukemia Fund

When we experienced our house fire earlier this year, we were completely overwhelmed by the amount of support we received from the online community. Specifically the hippie/crafty mama community,and the Art glass community. Both my husband and i have been involved with these online communities for many years, and have come to think of them as family.  The outpouring of love and support we received has forever changed us and made us realize the importance of giving back.

We knew that once we were back on our feet, we would begin to pay it forward any chance that we could. 

On Saturday, June 15th, 14 year old Orion Strong was diagnosed with AML , a rare type of leukemia, with long treatments and many expenses. Orion is the son of Kharma Strong, one of my online friends and a member of the online crafting community.  

According to the fundraiser page, Orion has been an amazing light in his community and always the first to raise a helping hand when needed. He is always the first to volunteer and has helped in supporting many events and activities including the Steelhead Association dinner, Ballet Folkloriko, Guereneville Gator basketball and volleyball games and wherever there is need. Orion received the Lincoln Stewart award for this recognition by the Russian River Firefighters for this honor during his recent 8th grade graduation from Guerenville School a couple of weeks ago. Despite the surprising developments, Orion is feeling very grateful that he will again be able to help people through his disease, by allowing the doctors to use his results to help others in the future. He has consented to participate in many of the new studies and research being done on leukemia advancement. 

The family has put together an online fundraiser to help. 100% of this fundraiser is going into an account directly for ORION. The support from all of you is a constant reminder to him of the support team he has behind him. Orion is getting his second of four rounds of chemo, called induction 2. In the best case scenario  we will be at the hospital, mostly in-patient (due to him being neutropenic and unable to fight off infection) for the next six-eight months. He is receiving frequent blood transfusions and is isolated to his room. 

If you would like to donate directly to Orion's Leukemia fund you can make your donations here.

 If you would like to send cards, gifts and words of support you can mail them to this address.

UCSF- 7 LONG

505 Parnassus Ave., box 0208

Patient Orion Strong, Rm. 759
San Francisco, CA 94131

In an effort to help raise funds for Orion and his family, Kenan is auctioning of this gorgeous glass pendant. All proceeds from the auction will be donated to the Orion leukemia Fund.  The auction is being held on the Tiemeyer Glass FB page, and ends on Sunday 8/18.  This link should take you directly to the auction, but it is pinned to the top of the page if it doesn't.  We will be hosting another glass auction to benefit Orion in the next few weeks, and i'm planning to auction another bendy doll as well.  

Orion's birthday is next month, he will be turning 15, and i think it would be wonderful if he received b-day cards and well wishes from all over!  A simple act of kindness that could make a difference to a young boy fighting a difficult battle. 

Please take a moment to visit the YouCaring page and read his story. You can donate directly to the fund, and/or leave words of support and encouragement in the comments.