2nd Annual Day of Awareness

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Bella (8)When Christie Zink stumbled upon Bella’s story almost two years ago, She was desperate to find hope; having just learned of EB, the pain associated with it, the challenges those affected were forced to endure everyday.  She kept reading that there was no hope and that there was no cure and just refused to believe that.  She continued to search until she found Bella’s Blessings.  It was there that she was captivated by this little girl and her family’s quest to give her a better life.  In was in this story that she saw hope.

Bella’s story on Pioneering Unique Cures for Kids site as told on by her father Tim:

“Our daughter Anabella Ringgold was born on May 27, 2009. Life took an immediate Bella (3)turn when Bella emerged from her C-Section delivery missing most of the skin on her left leg. In addition, it was noticed that the skin in her armpits, hips, and left buttock was peeling off in giant sheets as well. The absence of skin on her leg was indicative to EB, and the peeling skin was from the doctors pulling her out of the womb.

Undiagnosed in utero, we were completely flattened. Within minutes, daddy was accompanying Bella to the NICU while mommy was left in recovery without her baby. Words can’t describe what it was like for mommy to be transferred to the mother baby unit without her baby. For daddy, having his newborn in one hospital, his wife in another hospital, and his 3 year old at home was a losing battle.

Bella (1)There are over 500 documented mutations of EB, ranging from superficial to fatal. Unfortunately, a skin biopsy confirmed that Bella had one of the most severe forms of EB, Recessive Dystrophic EB, which is predominantly fatal in childhood. There was no cure for EB when Bella was born, but a team of doctors in Minnesota was experimenting with using bone marrow transplant to reverse the effects of EB. However, 2 of the 4 kids at the time had died from the procedure, so this sounded too risky to consider.

Despite unbelievable stress, worry, pain, and medical challenges, caring for such a happy baby brought joy into a situation that looked hopeless. From the beginning, Bella demonstrated an angelic presence, a consciousness that anyone who locked eyes with her would testify to. It seemed as if Bella was here with EB for a specific, predetermined reason, like a spiritual master on a mission to teach.

Bella participated in life in as typical a fashion as possible. We made the decision not to shield her from the world. The risk of infection was constant, but quality of life was more important. Part-time in-home daycare exposed Bella to the world of play and joy found in the mix of a bunch of exuberant children. Regular trips to the playground, shopping, and Disneyland allowed Bella to see life the way any other typical kid her age did.

As other children started passing away in the EB community, waiting for Minnesota to Bella (4)perfect their technique seemed more dangerous than not. By the books, Bella was the ideal candidate. Her big sis Ali was a perfect HLA donor match. Her immune system was young enough to easily accept a transplant. She was as healthy as an ox, aside from her EB, thanks to a feeding tube placed at 4 months, which allowed some of the dietary issues so common to RDEB to be avoided.

Unfortunately, just about every complication that could have occurred in a bone marrow transplant occurred. Bella spent 99 days in the Pediatric Intensive Care Unit, and on day +101 of her transplant, Bella’s heart finally gave out from multiple organ failure. The cause? The chemotherapy used to clear out her marrow.

Ironically, the transplant worked. Bella started to grow her sister’s skin not only on her body, but inside as well. A biopsy of her throat during her autopsy revealed that Ali’s skin cells were indeed healing Bella’s insides as well.

This has never been accomplished by any other treatment for EB to date.

It is for this reason that we have pledged our lives to making this treatment safe for all kids so that one day, no child has to die from this disease again.”

So, in honor of Bella, we ask each of you to refuse to wait for the change and instead be a part of the change.  We have dedicated May 27th, Bella’s birthday, as our “I Refuse Day of Awareness”.  What does that mean?  We want to make some waves for the EB community and go out on May 27th in honor of Bella sporting our I Refuse apparel with the intention of spreading awareness. Of course you can spread awareness anytime, but we would love to get many people doing it together on that day.  Get out in your local community and your online communities as well.  Share the stories of the children and adults living with EB,  join us and help raise awareness across the country.

You can get details on our Facebook Event Page HERE

If you do not already have I Refuse apparel and awareness handouts, you can get it all  here: I Refuse STORE

All net proceeds will benefit EB research through Pioneering Unique Cures for Kids (PUCK), which Bella’s dad, Tim, is the director of . Thank you so much for being a part of this and helping to be the voice for all of those affected by EB!

 

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