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.
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.
Tuesday, September 2, 2014
Saturday, August 30, 2014
Unlike any other disease, children with these neurological disorders must be treated before the symptoms develop since doctors have no ability to reverse the damage to the brain once it occurs. However, with revolutionary new gene therapies and cord and blood marrow transplants, children who would not live beyond the age of two get a chance to grow up. In some cases, doctors are not just seeing the disease slow down, doctors are making miracles possible, the promising new treatments the TCJF supports actually prevent these diseases from stealing our children's lives and give them a chance to have childhoods.
Doctors say we don't know if these are cures, but, these treatments represent a hope families have not dared imagine before now.
But, let's be honest, miracles are not easy or inexpensive.
Our partners need to get the word out about newborn screenings, encourage more states to adopt them, and help hospitals develop the best protocols for the children the newborn screenings find.Even with children who have not developed symptoms of the disease yet, these children and their families will require years of monitoring and care, and researchers and doctors working to get promising new therapies to these children as soon as possible.Right now, the most exciting treatments are not even available in the US. We need to change that given that newborn screenings will be giving us a chance to save children whom, without treatment, will die.
To be sure this is what Cal and all the children we have met have inspired us to do.
This is why we sell our cupcakes, children's lives depend on us caring about these diseases.
Because we live right next door to one of the finest children's hospitals on the planet, we know -first hand- how The Children's Hospital of Philadelphia is a place where extraordinary things happen, it is in our power to prove that cupcakes can change the world.
We are so proud The Calliope Joy Foundation has established a fund with a $22,000 gift to the Children's Hospital of Philadelphia to build a center of excellence for leukodystrophy treatment.
Saturday, August 23, 2014
But, then, something happened this summer.
Life is good. We had created the bubble around our family and only allowed people in who understood our world and made it sustainable.
It is this special world that only exists on 420 Conshohocken State Road.
But, you see, the problem is that next week, I must re-enter a world with students and people who don't understand what I go home to. I will be asked to readjust to the atmosphere where most people live. People who are clueless and oblivious and will want me to give them good grades, and be on time, and write reports. I will have to be around people who will complain how sad they are that their children don't clean their bedrooms or how hard it is to watch their children leave for college.
How my heart ached when I saw a mother scold her toddler for running away from her in the store. What I would do for Cal to run one more time. In my dreams Cal is in constant motion.
Because I will have to leave my bubble, there will be encounters with people who I thought were friends but have diligently avoided me over the last two years since "there was nothing I could say." Liz Scott warned me that when a child gets sick, you find out who your friends are. And Pat and I been wounded by the people who hid from us. To be honest, we were more overjoyed by the people whom we never guessed would stick around and faced Cal's fate with us.
This summer, I also witnessed a miracle, or the beginnings of what might be a miracle. And Dr. Waldman and I spent an hour talking, with grave seriousness, about how the cupcakes and Cal could save other children. What would need to happen to get the Milan trial to America, how we could create a national database of all the children in the US with leukodystrophies and expand the research arm of Children's National to get the currently undiagnosed leukodystrophy cases a name for their disorder.
A 30k gift to CHOP would be a good start, but Amy was blunt, we would need much more money to get a national database together and prepare hospitals for the dozens of presymptomatic children who now would be seeking treatment with the new newborn screening in New Jersey, New York and Pennsylvania. The other issue was that CHOP was clearly such a major player in the LD world. CHOP needed our help to be a part of a gene therapy trial in the US....this was something everyone would want to be a part of. This would put CHOP on the map, and CHOP loves to be on the map. This was our interests all aligning.
I told Amy, this is bigger than selling a few thousand cupcakes. And she did not disagree.
And yet, as I return to teaching classes, and reading books, and looking at my students fall asleep as I lecture them about why Emile Durkheim, Karl Marx and Max Weber are great minds that all educated people should know about, I don't want to argue with them anymore. When I see my students bored and restless with the challenging material, I will want to scream at them that they are not doing me any favors by taking time away from my dying daughter and that if they don't want to learn, why should we go through this charade.
When my colleagues talk about budget cuts and lay offs, I am so weary of pain and grief that I don't even have the energy to walk into the meeting to get the bad news.
There is a part of me that just wants to leave a voicemail message and say, it's just fine, I will come and teach classes to kids who don't want to be there, collect my paycheck, and run home as fast as I can to hold Cal while I still can.
It is hard to explain to people living in the real world why wasting my time is so sinful.
So, I pray for the strength to survive my re-entry into the atmosphere where people will be blind to their blessings, and ignorant of my pain, and I will be forced to use every ounce of my strength to seem normal and okay and fine so we all can go on.
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?