Calliope Joy Carr, age 2, August 2012, on the family's Make -A-Wish vacation to The Winnetu Resort in Martha's Vineyard. Photo by Audrey Le Tesson.
"An orphan disease is defined as a condition that affects fewer than 200,000 people nationwide. Most pediatric neurological conditions fall into this category, even though, taken together, this family of diseases kills thousands each year. The CJF's mission is to push new treatments and therapies, support families caring for these children and offer hope to those who come after our daughter." Maria Kefalas, Founder
The Calliope Joy Foundation was founded in 2013 with the goal of raising awareness about rare and orphan neurologic diseases in children and funding programs related to research and care. Calliope Joy Carr’s parents, Pat Carr and Maria Kefalas, launched the foundation after Cal's diagnosis at age 2 with late-infant onset metachromatic leukodystrophy: a rare, degenerative and incurable neurologic disease.
The Calliope Joy Foundation is dedicated to funding two main endeavors:
· The Calliope Joy Foundation provides start-up and bridge grants to medical professionals who work on orphan neurologic conditions in children. An example of a program that the foundation has funded is the Wellesley College Class of 1989 Children’s Hospital of Philadelphia Summer Fellowship in Neuroscience.
· The Calliope Joy Foundation will provide funding for direct patient and family services for children affected by rare and orphan neurologic disorders. Examples of programs that the Foundation will fund are children's hospice, in-home services for patients and families not covered by insurance, and travel expenses associated with treatment.
Recipients of gifts include:
The Children's Hospital of Philadelphia's Pediatric Advanced Care Team
The Children's Hospital of Philadelphia's Division of Neurology
Cal's Wishes Fund at Abington Hospital's Pediatric Hospice Unit
Wellesley College's Department of Neuroscience
Families around the nation needing financial help to remodel homes, see specialists, seek treatment, or care for children with neurological diseases.
The Foundation welcomes Letters of Intent from prospective grantees and the Advisory Board meets on a semi-annual basis to review proposals.
You can learn more about the Carr-Kefalas family in Alfred Lubrano's front page story for the Philadelphia Inquirer dated March 29th, 2013.
Sunday, August 17, 2014
Meet Sive Price, the founder and designer at Sive Price Jewelry, Drogheda, Ireland. Sive is 11 years old and wants to use her talents to support kids with neurological disease, so, she has donated her time to this cause. We will be selling Sive Price Jewelry at the Cupcake Challenge and she has already raised more than $100. We are so proud and appreciative of her work on behalf of kids like Cal. Sive is our youngest Red Velvet Sponsor.
Friday, August 15, 2014
Wednesday, August 13, 2014
This doesn't mean that I have accepted we will lose Cal, but, the aching wish and hope that Cal's life has some greater meaning has taken shape into a firm conviction. Even as three children with MLD died in a week this summer, i could find hope in watching Hannah Ginion go home and leave the CHOP ICU and hearing about the miracle of Giovanni Price's gene therapy.
So, I will leave you with this image of my Cal. After the selfies of me in the hospital and living in a hospice unit and thinking I would go mad, here is the photo of my beautiful Cal, our inspiration, the beauty and magic of my mermaid is so obvious to me in this photo. And I think I know what I meant, more surely than I could have imagined two years ago, what this paradox of excruciating joy means.
You can see it, can't you? Don't you see it now too?
Tuesday, August 5, 2014
My husband and I went out to lunch today, no kids, just him and me. It took a while for us to figure out how to talk. Pat was quiet and reserved. He has so much work now, and I worried he wanted to tell me something about himself or the cancer. But, maybe, he was just preoccupied. It's not as if I don't withdraw and just drift away from time to time.
Sometimes it's hard to talk about everything that is going on, it is easier to be silent than to speak the truth. So, Pat and I sat and didn't say much for a long time. Then, we started talking about the kids, we analyzed Camille and her excitement over high school and college. She is so like me, her mother, jumping ahead to college when she hasn't even gone to high school yet. I told Pat I had spoken to Camille's guidance counselor and appraised the staff of our family situation.
Pat and I talked about how PJ had dropped all his winter weight and was tan and filled with energy from long days in the woods and playing soccer at camp. Pat and I marveled at how Callie was doing better than any of us dared imagine after this winter. I even asked for OT and PT to come back since Cal was stronger than she had been in months .
We spoke about the Cupcake Challenge, my favorite topic, and we discussed who would run the VIP area and how he needed to get going recruiting the young bakers for our Next Great Baker contest.There was even a subtle little compliment. Pat indulged me with praise, he was amazed at how my year of letter writing had yielded a list of major corporate sponsors, including exciting relationships with The Philadelphia Eagles, Giant Supermarket, and Whole Foods Market.
Pat nodded his approval at all that we had done in 18 months. We had sent a student to CHOP for the summer, helped families all over the country, established a fund in Callie's name for the hospice unit, given gifts to CHOP, appeared on the front page of the Philadelphia Inquirer, convened a Board for the Foundation, filed our non-profit paperwork, published essays in Slate and Huffington Post, sold and eaten thousands of cupcakes, received a Community Quarterback Finalist Award from the Eagles, and announced our first request for applications of grant proposals.
The mural project had failed, but the Foundation had raised $60k and was already funding projects and seeing ripple effects. And how can we forget the correspondence with Buckingham Palace wishing Callie well and expressing gratitude from The Duchess of Cambridge for my kind words about her work on behalf of children's hospice?
Yesterday, I spoke for an hour with the CEO of Hunter's Hope and discussed how we could work together to get CHOP ready for the presymptomatic Krabbe Disease children we would now be seeing once NJ and PA passed revised newborn screening laws to test for the disease as we all expected. I might have my concerns about this approach, but if the testing would find children, we wanted to help CHOP and the Kelly Family save these children. It was amazing to think we could play a role in helping children who would never speak or walk get the chance to do all those things. What would I give to hear Cal speak again and watch her run after her brother or hug me just one more time.
Then, I did something that I had wondered I would ever be brave enough to do. Our little Foundation sent money to the Price Family to help them get to Italy and participate in the gene therapy trial. For a long time, I had asked myself if I could save another child if Callie could not be saved. And when Dr. Waldman suggested it last year, I had doubted that I could do it. I resented Dr. Waldman for even making such a request. But, today, on August 5th, I spent an hour preparing a box for the Price Family. I included cupcake stickers, buttons, t-shirts, wristbands, an I-Pad for the long months in the hospital so Amy Price could communicate with the outside world when Cecelia was on isolation, and a check to help them pay for their expenses in Milan.
That cardboard box which had sent Cal her medical supplies for her feeding tube bolus bags was now carrying our investment in a miracle.
Here was a doctor telling me that this was indeed a miracle.
Can I tell you what it feels like to behold a miracle?
This new pain makes you forget how to get air in your your body, and you can't move.
You feel as if you are floating away even though you can't control your muscles.
And the miracle's reality is so powerful it takes on a physical form, it is as if you could grab it and pull it close to you.
And, as you take in the truth of a miracle, the dull, throbbing pain of everyday watching Cal with this disease ends, and gets replaced by this sense that nothing else matters because you have seen something you believed was impossible.
And you feel something divine and beyond you and you feel like more than yourself, but, not yourself at all. The relief is like getting drenched in a downpour of sweet smelling rain.
Then, I thought of my father, who believed in miracles and was angry when I refused to have faith. So, now I find myself longing to see my father to tell him he had been right about miracles all along and that Cal and our family and the cupcakes get to be a part of one.....
Monday, August 4, 2014
Saturday, August 2, 2014
Friday, August 1, 2014
Remembering Alex, 10 Years Later - Liz Scott