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
Kind Pediatric Hospice Unit at Abington Hospital
Angel View (for Josué Candelario )
Wellesley College's Department of Neuroscience
MLD Family Compassion Fund (for Josué Candelario )
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.
Recognized by the Philadelphia Eagles as a Community Quarterback Finalist, 2013.
Thursday, July 24, 2014
Wednesday, July 23, 2014
So you praying folks, I have a favor to ask. On the 7th Floor East of the Wood Building at CHOP, there is a little girl facing my Cal's fate and a mother facing mine.
Hannah Ginion is the beautiful little girl I met a year ago when I went to CHOP for their Radiothon Fundraiser for the Pediatric Advanced Care Team.
Hannah's mom Vicki chose to fight Krabbe and even led a successful campaign to raise awareness of Krabbe to get the dysfunctional and corrupt politicians in Harrisburg to add Krabbe and several other lysosmal storage diseases added to the Commonwealth's newborn screening panel.
Those of us in Philly who follow local politics understand how extraordinary it is to get our officials in Harrisburg to do anything.
The Hope for Hannah Facebook page is a juggernaut of social media prowess, with 50k followers.
Each day Vicki provides loving and uplitfting updates on Hannah. I admired Vicki for the impact she has made, but I am too earnest and pragmatic to find solace in cheerful posts and the warrior mom who will defeat Krabbe and a dangerous belief in hope.
Simply put, Vicki and I didn't agree on how to mother dying children.
And so, after quitting her job and devoting more than a year to Hannah's care, Vicki now knows more about treating children with complex health needs than CHOP's best ICU nurses. After resisting the idea of palliative care and hospice and refusing to give up the fight, Hannah's body is failing and Vicki must now surrender. For Vicki, like so many parents and doctors views hospice as the same as defeat.
Hannah was brought into the ICU, and Hannah coded and was intubated. Last week I was struck by how Vicki thanked the CHOP team's willingness to do everything.
After that, the tone of the postings and updates changed. I knew what was happening. This was Hannah's second hospitalizaiton in just a few months.
When I read the news about this, I went to the hospital right away to offer my support and be present for Vicki and Hannah in this momentous decision.
Vicki and I are not friends so much as comrades in arms in our battles against this disease.
I found Vicki at CHOP and gave her a mermaid bangle and told her I would ask my church to pray for her and Hannah. I let myself be foolish by asking a stupid question. "When would they let Hannah go home?" Vicki was so calm when she answered, " no one is sure how Hannah would do." I asked the question again, not really believing what Vicki was saying. "Is there a way to go home?" And Vicki just shook her head and used the same words to answer: "we just don't know how she will do." She explained, "Some more people need to get here to the hospital before the doctors extubate..." and Vicki's words trailed off, she didn't say they were coming to say goodbye. But that's what we all understood she meant.
Because we are not friends, I didn't go into the room to see Hannah, and Vicki didn't invite me, but part of me wanted to go through those glass doors and touch Hannah's hair and say goodbye too. I wanted to see if I could do this thing I had feared so very much. It was a test I had failed with my father. Daddy had not wanted to say goodbye and I had missed my chance to say goodbye even as I knew time was running out. Given all that had happened this winter, it was just too much to be there and let him go. I had been a coward in my father's death. Or just too weary to make that last trip on Christmas Eve. I told myself Pat and the kids needed us all together for the first Christmas since Pat's cancer diagnosis.
It seemed wrong to be with this woman's dying child when my Cal was waiting for me at home and it would never make up for not seeing Daddy. You can't rehearse for death... like you are trying to master the lines in a play.
I started to cry and gave Vicki my phone number and said please let me know if I can help with your older girls, there are some great resources for siblings I said. Trying to be useful is always my default position when I am at a loss and not sure what to do.Vicki nodded, she understood her older girls would need help because a grieving mother would not be able to give them what they needed for a while.
And, so, tomorrow, as Father Chris would say, Hannah will get to go home. For me, I wish this home is to sleep in her bed with all her toys and her mother at her side for a few more weeks or months Or else, she will fall asleep and go home and the woman of my church will pray for the for the day Vicki is reunited with Hannah again. And, in a time in the future, the women at my church will offer the same prayer for me and my girl.
Monday, July 21, 2014
My secret stash for dealing with a day of doctors' appointments at CHOP. The nurse said I was the first person ever to suggest CHOP needs a cocktail lounge-wine bar-beer garden on the campus. Could raise some funds and save everyone some time.
Thursday, July 17, 2014
My only answer for Geralyn was "I want my outside to look like how I feel in the inside." My grandmother from Greece wore black everyday, it was a sign of being in a constant state of mourning. And I want my hair to be like wearing black all the time. So there would be no question where I stood and it would be a warning label, alerting the world to the special handling instructions required for dealing with me.
When I posted my idea to do this on Facebook to group source the plan, my friends came out at a 40-60 split with a slight majority supporting the idea with caveats of suggestions like funky highlights and a retro 1980s spiky, punky look. But, it isn't 1985 and I am not Sinead O'Connor, shaving my head is not a fashion statement.
To be sure, I know most of my friends indulge me in every crazy idea like writing to the Duchess of Cambridge or the Vice President of the United States. But this was more unsettling. A grad student who works with me joked, "You would look so badass." I have to admit, the idea of looking frightening was very appealing. The theatricality of it makes sense, since increasingly, I just don't want to fit in and seem like everything is fine.
I am not depressed now, not depressed in the conventional sense. I am facing great loss and uncertainty. My life demands a fair amount of crazy manic grief, indeed, not being sad or depressed or mournful or whatever this is would be unhealthy and inappropriate.
So many people tell me how amazing I am and how well I am doing. Part of me wants to shave my head as a very undeniable corrective to these good wishes. I am not doing great, I am not amazing. Look at me, I shaved off all my hair.
The good thing is that Cal is doing well, and yet, the urgency of our situation feels more inescapable so cutting my hair off is a way to let the world know, without explaining anything. A shaved head will be the visual evidence of how I feel on the inside.To make myself ugly goes against the grain so very much, you can't look away and not see how I look.
A colleague observed that my in-depth studies of grief of late have made me an expert on catastrophe. Sociologists, in parituclar ethnographers, can't help but take notes and write about what we see: it is our curse and our blessing.
When something horrible happens, I am drawn to the situation of other people's tragedy and feel compelled to manage and explain it and guide people through their fear and loss like I am teacher in a classroom.
My friends facing tragedy, who were holding in secrets, now let themselves pour their pain out since they know I get it. In just one week, several friends confided difficult personal situations that had wounded them so very much but they had not spoken about it to many people. I was struck how my smiling, carefree friends had hid their sadness and pain so completely from me, in some cases, for years.
The woman I used to be was not someone you would share such stories with. But now, because of my Dad, Pat and Cal, it is easier for me to be around people who are in the midst of trauma than to try to play along with the real world where everything is okay.
It's funny how I keep studying grief and measuring my pain through other people's response to my anguish. It's like it can't be real unless I see how other react. Watching people react to me helps me figure out what I am supposed to be.
You see, the world would have to see a woman with her head shaved, they could not ignore i and pretend everything is fine. Maybe they would wonder if I had cancer or had had some sort of surgery. Something would have to be wrong for me to look this way.
Wednesday, July 16, 2014
It may be my subconcious working over time since three children wth leukodystrophy died this week, at least 2 of the 3 had MLD.
At work, a few days ago, I asked the Chair of my department if I should have a plan in place if Cal dies, I calmly reasoned that leaving my students, who are paying thousands of dollars, in the lurch if Cal got sick again would be unfair.
I had started to raise the subject with the nurses and the doctors who supervise Cal's care. How could I not think about this after last winter semester? I don't know if I could live at CHOP or the hospice unit for weeks and go and teach classes again in my sweatpants and Uggs.
It was one thing to do it when this situation was thrust upon us, but two years in a row seemed unimaginable. Knowing what was coming. Maybe it was time to leave work.
This thought has not left my mind since Karen, our beloved hospice nurse, absentmindedly added, "If I am here next May" to the end of a sentence.
At first I had dismissed this statement as an experienced hospice nurse's caution, something she tells all her patients. But then, three children died in a week, and all the deaths were like instant replays of last winter.
Then, Dr. Waldman, had suggested we create a pulmonary plan and Dr. Hogan wanted to discuss "what steps we were willing to take." I had pondered what Cal's death means in the abstract for so long, like I was back in school, and trying to master some material for an exam in graduate school. I had taken to looking at other people's blogs to study how to do this, and all I could come up with in my definition of what is "enough" was smiling. I imagined the test would be like the ones I give my own students with blue books, where you just give everything you have into the most complete and detailed answer.
But then in a moment the answer boiled down to a sentence .
So, I heard myself say, "When Cal stops smiling." But then, the good news is Cal smiles so very much right now, she laughs so hard her body shakes, and the gift of that gives me the strength to know that when smiles aren't possible, that's our enough.
I can't remember the last time I heard my father laugh. My father had the best laugh, this chortle which I have inherited but sounds ill suited in a woman. It is a big man's laugh. Not a physically large , but the kind of person with a huge personality.
So for now, I will weep with joy, at the gift of my daughter's smile and laughter, and I will pay close attention, taking a census of smiles and giggles, and look to see when that stops.
But then, when I woke up this morning, Cal was laughing and so happy to see me, reminding all of us once again that there was no test to be taken, we must just to be here and not take any of it for granted. My control over a care plan was just fantasy.
So, a wonderful box of swag for the Cupcake Challenge from our friends at The Eagles and Cal enjoyed watching Mickey Mouse and we forced ourselves to be grateful for another day.
Tuesday, July 8, 2014
We don't know yet if this is the breakthrough that the experts did not believe we would see for decades. But, last year, when the data from Dr. Biffi's research was published, a first hurdle was overcome in the long process to get one of the first gene therapy trials for a neurological disorder approved in the US.
If Cal and the cupcakes can be a part of that, even in a small way, this will be game-changing. So, while it seems silly or funny when I talk about PJ's wish to sell 1 million cupcakes, the Price family will show you why this matters and why, even though it is not easy, we must work to help the children who come after Cal.
Here is the family's blog...