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.
Because of the passage of Pennsylvania's Hannah's Law and New Jersey's Emma's Law, doctors will be able to save the lives of 66 children born each year with globoid cell leukodystrophy, or Krabbe disease.
With your help, doctors have the ability not simply to cure the disease, but to
ensure these children never become ill. Finding children before they lose the ability to swallow, walk, smile, breathe, and feed themselves is critical for treatment since once symptoms develop there is no way to reverse the damage to the brain.
The Calliope Joy Foundation is helping our partners at The Children's Hospital of Philadelphia become a national leader in the treatment of orphaned neuruological diseases like leukodystrophy. In 10 years, hundreds of children will be in school and celebrating birthdays
because of what we made possible today.
Help us give children their childhoods and
change the world with cupcakes.
#EatCake & #HelpKids
Tuesday, November 25, 2014
Saturday, November 22, 2014
Monday, November 10, 2014
Helped a family get a specially adapted van.
Shipped care packages to children all over the planet.
Provided funds for a family to renovate their home to care for a child with leukodystrophy.
Established the Cal's Wishes Fund at the Kind Pediatric Hospice Unit (one of five children's hospice units in the nation).
Made gifts to extraordinary families to help make birthdays extra special.
Established a research fund at the Children's Hospital of Philadelphia to identify unspecified leukodystrophy cases in 62 children.
Funded a summer fellowship for a student to work at the Children's Hospital of Philadelphia with researchers and clinicians in neurology.
Supported CHOP's Pediatric Advanced Care Team who care for medically fragile, neurological patients.
Worked with our partners at The Children's Hospital of Philadelphia to build a Leukodystrophy Group to care for children identified through newborn screening with globoid cell leukodystrophy.
#EatCake and #HelpKids
Cupcakes can change the world....just watch what you help us do next.
Thursday, November 6, 2014
Wednesday, November 5, 2014
The old me, as a scholar and an intellectual, could appreciate the clear-headed and reasoned arguments made by right to die advocates.
But, in this matter, my view does not come from religion or abstract theory or even sociology, I am the mother of a dying child, and all I feel is despair over Brittany Maynard's choice.
Don't get me wrong, there is good reason to fear death and dying, the vast majority of us should contemplate "the great silence" more than we do. Humanity would be in better shape if we did. But, it seems that the Maynard debate confuses our fear of death with the fear of dying. Dying requires pain (but lots of things do, like childbirth and love) and death is something beyond this world.
Most of us (believer or non) view death as absolute stillness, and quite possibly nothing and everything all rolled into one.
And, my anger comes from a nagging question: I can't help but wonder what Brittany Maynard would have thought if she had spent a day with Cal and me.
Brittany Maynard feared pain, losing control over her faculties, body functions, the ability to move and speak, all these things were lost to Cal years ago.
Even now, as it requires three adults (one nurse, Stephanie and I) getting Cal dressed, carrying her limp body downstairs, Cal has pain and discomfort because of the nerve damage and muscle atrophy when we touch her. And yet, even though there is pain and suffering required for getting her positioned in an specially adapted stroller so she can go to her big brother's Halloween parade: there is still joy.
So what would Brittany have made of this spectacle, would she say Cal is not dying with dignity?
Please understand, as terrible as an inoperable brain tumor is, as frightening as sickness and pain were for Brittany Maynard and all of us, on the day she drank the barbiturates Brittany could still eat and kiss her husband and sit in the living room and laugh at a movie on TV. There was so much life left.
And yet, at my house, we work so hard each and every day for the smallest signs that Cal is comfortable and happy. We are overjoyed if she tolerates her feed, moves her bowels, empties her bladder and laughs in recognition at the sight of her sister or brother.
I would give up a limb to watch my daughter enjoy a piece of birthday cake, swim in the ocean, or just be able to wear a pair of shoes (since her muscles are so stiff shoes fall off) and go out to church wearing the beautiful dresses I loved picking out at the store for her.
It pains me that Brittany's fear of death blinded her to the joy of living, the meaning of life, and the fact that love and connection could never be destroyed by a glioblastoma. It wounds and saddens me, that Brittany could not see the value in the life my daughter has.
I am offended that Brittany chose to leave before things got hard, and that this choice is applauded as brave.
My daughter is brave, and my children and husband are brave to face every day and seek out the meaning in Cal's life even as this disease steals more and more from all of us each day.
Cal's nurses and aides are brave because they care for and love Cal in the face of a disease so determined to take everything.
When Cal was diagnosed, I refused to succumb to the idea that giving up and curling into a ball and embracing the great silence were my best options.
The wisest words anyone has ever said to me in all in this ordeal came from Father Peter Clark, a Jesuit, who spends his time working with the doctors and families in the St. Christopher's NICU, trying to help medical teams and families figure out when it is time to let go. Father Peter explained after Callie's diagnosis, "I promise you if you have the courage to be present with children like your daughter, they will reveal to you the meaning of life."
I am so very sorry that Brittany could not understand what my 4 year old daughter seems to grasp so purely, the beauty of being in the world, surrounded by people who love her and the transcendent power of giving back only love.
So many of us weep for Brittany because she underestimated joy and love's power to defeat everything.
And I wish she had met my Cal...maybe Cal could have shown her a way to go on...
Sunday, November 2, 2014
Technology now allows us, with the 20/20 clarity of hindsight, to time travel, at will, to the precise moment we recorded with a photograph. The thoughts, feelings, and whimsy of the moment can be pulled up instantly. But I have noticed how mothers like me torture themselves with Timehop on the leukodystrophy social media traffic,
I have my own Timehop.
As a rule, I steer clear of revisiting what was.My survival depends on not thinking of what might have been for Cal and mourning my fantasy. And, if you visit our home, there are precious few relics from our old life. Over a period of several months we have removed all the toys we used to play with. The most significant image of Cal is the painting Perky Edgerton painted that July I met Amy Waldman. I prefer to think of July 5th as the day my life collided with Amy Waldman's rather than to revisit why Dr. Waldman and I had to meet.
As I was planning the fundraiser with Jim Kelly, I was thinking how powerful the juxtaposition of those photos could be. When confronted with the photographic evidence of how Cal was and what MLD has done, it seems to be that most human beings would find it impossible not to write a check to eradicate this disease from the planet. We would not need to host a fundraiser at all, just get powerful and influential people in a room and s torture them with photos recording what leukodystrophy had stolen.
But, I must confess, there is one simgular photo that is tucked away on our fridge that represents all that we lost.
At our house, the fridge is covered with school notes and the magnet collection we started in grad school. We have magnets from every state or city we traveled to, but Pat and I rarely make these trips for work. So the newer magnets include phone numbers to call in case Pat's home infusion goes wrong or if we need hospice to come over. Our fridge is a collection of our life's memories, as precious as any photo album, my personality has never been one to organize scrap books, I have always had a hoarder documentarian's aesthetic.
Anyway, on the corner of the fridge you will find my most cherished photo of the family. It is a perfect moment, its perfection resides in the fact that I had no idea this was a pivotal moment. I can recall, with distinct clarity the first time I saw the photo, I liked it, but I remember being self-conscious about my appearance and arrogant enough to assume this would be one of many photos of Cal celebrating a long line of happy moments.
We were dressed up to celebrate PJ's kindergarten graduation. PJ had gone to the barber with his father. My Camille is so stunning and still a kid, just a year away from having her father's cancer diagnosis end her childhood so prematurely.
There is Cal, about 6 months old and still nursing and so chubby and smiling. PJ is a beaming big brother who loves to show off his baby sister to his classmates, and no one makes Callie happier than PJ.
and pushing Pat to give me the money to remodel the kitchen.
I had just gotten a promotion at work, and I was pretty insufferable: three kids and 3 books in 10 years at Saint Joseph's. I would complain about not having enough time for myself and feeling trapped by the time required to care for three perfect, healthy children. I got to be annoyed because my in-laws will be with us for two weeks for a visit. It is hard to remember how I could manage so much clurlessness about my marvelous life.
The photo is now so remarkable because it is proof we used to be so unremarkable.
Now I look at the photo, and I seem so unburdened, so carefree and pretty. Yes, there is a pretty photo of me. Women with dying children are not pretty, the horror of our lives alters our DNA, and we get these sunken eyes, dark circles , and this look of pain that never leaves....and what was a really bad day in our lives before illness and grief would become an unimaginable level comfort for our current life trajectory. We are always weary, and no matter what we do, nothing gets better.
I look at this photo and now see it for a perfect moment of exquisite happiness, I had no idea what was coming and didn't have the good sense to be grateful for my wonderful life. And so I let myself see this photo each day, just for a moment, to remember I am not allowed to complain about my life since it once was more than I deserved.