Our Mission




Pennsylvania's Hannah's Law, which mandates expanded newborn screening for globoid cell leukodystrophy and five other diseases, was named for one year old Hannah Rose Ginion. Hannah died on December 28, 2014 at her parents' home in Levittown, PA.


With your support, doctors have the ability not simply to cure pediatric neurological diseases (namely leukodystrophies)

but to ensure these children never lose the ability to speak, walk, eat, and breathe unassisted. We work tirelessly to help doctors and researchers provide children the best care (from active treatment to palliative/hospice care). At present, the primary recipient of our funding will be The Children's Hospital of Philadelphia to build a national center of excellence for the care and treatment children with leukodystrophies. The 2015 passage of expanded newborn screening with Pennsylvania's Hannah's Law and New Jersey's Emma's Law means we can offer families a hope that was impossible not very long ago. In a fast-approaching future, hundreds of children will be in school and celebrating birthdays because of what we started today.

Give children their childhoods and

change the world with cupcakes.

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    Sunday, February 15, 2015

    Letting myself go



    The author's photo taken for my book dust jacket. (2008)
                                           

     When you find out your child is sick and will die, you must go crazy. As a sociologist, I have taken to studying the madness grief brings.  There is no singular form of it, some people cry, others vomit or lose control over their body functions (you might actually pee, or worse, in your pants), some stop eating, others eat constantly. Some wail and cry all the time, others barely speak and hardly shed a tear.  More than a few try to run away from the horror show, thus the 80 percent divorce rate among married couples who lose children.

    You get the idea.


    Once, I had judged those people who lost their minds as weak.  After Cal got sick, the shattered were the only sorts of people I understood.

    The fact that I would lose Cal meant I would never fit in again, and, as a result, a liberating lunacy descended.  Charles Dicken's Miss Havishem sitting in the ruins of the her life wearing a wedding  was no longer a literary device, but a lifestyle choice.

    My husband Pat took in my breakdown with a silent stoicism. He knew there was only futility in trying to prevent it, so, God help him, he let it follow its course.

    In this mix of resignation and choking despair, I found myself studying the ladies you see in the market, the ones with their blush put on like a child's red crayon scribblings, the ones who smell funny and dress in wool sweaters during August.  I kept my own inner-bag lady in check because of my children, but she was always there.

    I took valium and anti-depressants to tell myself I was doing something to stave off the crazy. All the pills did was smooth out the jaggedness. On the good days, I am just not so acutely aware of my anguish. Walling  off the worst of my agony meant I managed to drag myself into the shower most days of the week to avoid smelling too bad and forced myself into the office for work. I would actually tell myself, "you should not wear pajamas to Wawa at midnight to get donuts because you are letting the inner-bag lady show too much." I cared enough not to seem too crazy and broken, that's hardly the same thing as being okay. Most days, appearing okay is a self-conscious performance for the benefit of others who find it too hard to face the real me. 

    A few friends waded into the swamp with me, but even the most courageous could not stay too long. Who could blame them? If I could have never had this happen I would save myself and never think about leukodystropy  and CHOP and hospice ever again.

    For me, insanity was letting myself go, and just not caring anymore. Besides the manic plans and letters to the Duchess of Cambridge, there was the eating. 

    I have not been trim since my college days. When I fell in love I stopped eating, but even though I stayed in love the eating like a bird didn't last. After Pat and I married, the life of a graduate student was so sedentary and it was fun and easy to cook and eat. I gained weight for my three pregnancies that I never bothered to lose. I had enough confidence in myself not to care about such standards of beauty. I would laugh at the women who starved themselves to be impossibly thin. Here among the yoga pant- clad Main Line moms, I  stood out with my size 16 self.  

    But after Cal's diagnosis, it was different. 

    It was not binge eating so much as a lifestyle without structure or order when it came to the consumption of food or drink. If I wanted a donut or a cupcake, I never denied myself. When I couldn't sleep at 3 in the morning, I would eat something that made me feel better. I found myself indulging in my favorite cravings from pregnancy: bowls of cereal, toast and peanut butter, cheese and crackers...But I ate at all times of the day without any thought to the consequences.

    Before, even though I was overweight,  with make up and a stylish outfit I looked and felt pretty from time to time. People would say I looked nice  and I could believe their compliments. After Cal got sick, it was impossible to be pretty.

     Even my internist,  Dr. Kearney (a mother of four who could probably fit into her high school prom dress),  who once joked that a woman with my intelligence surely knew there were no fat old people, ceased her scolding about heart disease and diabetes after Cal's diagnosis. As far as my doctors were concerned, the fact that I was still standing was a medical miracle and no would deny a woman like me whatever solace I could find. It seemed cruel to suggest I join Weight Watchers.


    But, three years in, I find want to reclaim my old self.

    I look at the photos of myself and am horrified at how the pain and grief seems to seep out of my pores and just lingers in my eyes.  Now, I long for someone to say I look nice and for it to be true. I hit a bottom (not the bottom just a valley) a few months ago when I threw out all my clothes. I have taken to wearing a uniform of my late father's sweater, a rotation of three pairs of fat pants that don't pinch too much,  and the Ugg boots that I wore when I was pregnant with Cal. 

    It was my equivalent of the black dress my Greek grandmother wore every day for the rest of her life after her husband had died. 

    And yet, without any explanation, vanity started trickling back.  I started to notice if I wore the same sweater and pants two days in a row when I taught my classes.  I went to the hair dresser to take care of my roots and even returned to the cosmetic counter to save my skin from the worst of three years of neglect from not using a moisturizer or sunscreen.  I went back to the gym and resumed a modest routine. 

    Then, about a week ago, I started to be rather choosy about what I ate, and thing that made me tackle food was the dinner with the Kellys. Jill Kelly is one of those beautiful women who even managed to look lovely and stay trim when she was living in a hospital when her husband underwent radiation.  Jill Kelly's  genetic good fortune and the resources of an above average income surely helped, but, I told myself that if Jill Kelly could be pretty, I could do.

    So, I stopped eating the junk food and drinking the wine.  There has been no dramatic change, it's just a different direction. There are bad days when I want to get that food to feel better, but, overall something has changed and I can make myself feel better without the antidepressants, valium and it is a just bit easier to say no to the donuts.

    A friend asked me what was different, I said I had gotten used to the grief. He suggested a different explanation, as he took note of me eating a veggie burger on salad greens instead of my usual cheeseburger with sweet potato fries, "Have you considered that maybe you have just figured out how to be grateful about what is possible and seeing how well Pat is doing well and that Cal is okay and comfortable. Maybe you are just spending less time being afraid?"

    "Yes, I have just gotten used to it." I said  again.

    "No, I hope you don't get used to this. It's something else." My friend insisted.

    "More managed, maybe. Is that the right word?" I said, poking at my salad.

    "That's better," my friend said, "managed."

    As I thought more about it, that wasn't it either, as I kept searching for the right way to explain it. 

    I think the person I was before Cal got sick isn't totally gone, there is enough of the woman I was who is still there, and, to my great amazement, she is trying to come back.




    Friday, January 30, 2015

    The amazing true story of the cupcake quilt

    by Pamela Boatright at Pamelaquilts.

    Every quilt I make  has some kind of a story. Some of the stories are simple - I loved the fabric and wanted to make something out of it.  Some of the stories are more intricate, and reach beyond my sewing room into another person's story.  This is one of those quilts: It's not a complicated quilt, but it is a quilt that is a masterpiece to those it touches. It is a happy and colorful quilt that was created by a community- my skills were simply those that that brought it all together in the end. All the beauty of this quilt is from the people who contributed their love. 

    Taken separately, each square is lovely in itself.  But all together it is more.  It speaks of joy, of love, of community.  Read here to see what 5000 cupcakes, 1000 people and One Cause look like.  And read here to see What Cupcakes Can Do.  You can see that every small donation matters, because it all adds up to something more.  We can help.  I hope that some of you will choose to make a donation to this cause, because it can make such a big difference in what the future holds for children with these neurological diseases.  

    I started on the path to making this quilt earlier this summer.  I got a custom request in my Etsy shop from a mom who wanted a quilt and a couple of pillowcases made for her daughter.  It would be used on a hospital bed for her little girl who was on hospice care.  
    My heart hurt when I read that and I just had to take on the request - Maria (the mom) had some cute fabric picked out with cupcakes, so I ordered it and got the project finished for her as quickly as I could.  I didn't want to be nosy and ask for the whole story about her daughter, so I just made the quilt as requested, and when she asked if I could donate a baby quilt for the fundraiser she was planning I was happy to use the leftover fabric to do that for her.


    Then, Maria came up with the idea of sending fabric squares to be colored, then sewn together for another quilt.  It sounded like a great idea, so I jumped on board with the plan and cut out 100 squares to be used for the project.  I still didn't really know the whole story about Maria's daughter, but I know I was doing something to help and it felt really good to be a part of that.


    After the fundraiser, the colored squares came back to me to be sewn together.  Her friend Julia also sent me the logo for their foundations and asked if I could add that to the quilt.  This was when  I learned about the Calliope Joy Foundation.  I read about a family that has seen more heartbreak than I can fathom.  About a sweet little girl that is so loved by her family and community.  About a mom that is dealing with something that most of us cannot imagine and is finding the strength to not only go on each day, but is also determined to do something to help other families and children.



    As I cut all the sashing and sewed the squares together I smiled as I saw each block.  How carefully the children colored and printed their names.  The bright and colorful colors are so happy, this quilt cannot help but make you smile when you look at it.  I added a few pictures of Cal and her beautiful smile as well - because this quilt really is all about her!


    I am so glad I had the opportunity to work with Maria, to help bring some joy and beauty into her family's life.  Quilts can be such a comfort, and that's just one of the reasons that I love creating them!

    Tuesday, January 27, 2015

    Sunday, January 25, 2015

    Only 100 seats left

    We have not even gotten to Super Bowl Sunday and just 10 tables  of  25 are left for our evening to benefit the launch of the care network for Leukodystrophies at The Chilldren's Hospital of Philadelphia. If you want to join Jim and Jill Kelly on May
    15th, don't delay.

    Tuesday, January 20, 2015

    A new essay published in The Mighty

    A new essay published in The Mighty


    We all have our diagnosis stories. No matter how long ago they happened, every parent like me remembers the days their hopes and dreams for their children became impossible. It was June 26th, 2012 at 7:45 am when a doctor and a social worker walked into our room at the Children's Hospital of Philadelphia and told me my beautiful little girl, who had trouble keeping her balance and seemed stalled in learning to speak, despite the therapists coming to our house, that the MRI suggested Cal had late-infantile onset metachromatic leukodystrophy.

    There was nothing to be done and Cal would eventually lose the ability to walk, speak, feed herself, hold up her head, and see.  More than that, this disease would take Cal one day.

    It is a diagnosis so grim it makes you wish for a brain tumor.

    The day we heard the word leukodystrophy for the first time, I can assure you I was anything but brave. I wanted to leap out the window of the hospital, I collapsed on the floor. I cursed the nurses and doctors. All the while, Cal, who was just two, wanted to snuggle and read books and sing with me.

    When you learn your child won't grow up, it is astounding how quickly your old life ends. You mourn this old life as much as you grieve over your child's prognosis. And, if I could go back in time, and I do from time to time when newly diagnosed parents ask for my help, I try to tell versions of myself what I needed to hear that June.

    First, this is terrible, the worst thing that can happen, and it will feel like you are dying, but, I promise you, you are not. And after a while, once the shock of it gets absorbed into your system, you are superhuman.  You will be astounded by your courage and clarity. But even though you will find you can do amazing things, pace yourself, ask for help, and understand the limits to your power.

    Surround yourself with people who can be there. You will be surprised by the people good at helping you, and the ones who are not. Steer clear of people who will ask you to take care of them. Forgive them for not being able to say or do the right thing, but, you need people around you who will be a help to you.

    You will require a sort of tunnel vision, please do not dwell on the life you dreamed of for your child. And take brief visits to your old life. Figure out what the disease can't take away and create joy around what is possible.  For children with leukodystophies, there is so much pleasure to be found in sharing a story or a movie, having a bath, and being around people who can engage with Cal on a level that is right for her. This year we celebrated her birthday with a sing-along featuring all my daughter's favorite songs. She laughed so hard she got the hiccups. It's true she could not open presents and eat cake, but it was still a celebration.

    Making a child comfortable, keeping away the pain, and getting her to laugh  and smile each day requires great effort but, unlike before, you will take none of it for granted. You will be astounded at how much pleasure and comfort will be possible in things you hardly noticed before. 


    Create lots of memories, take photos, and don't just use your phone, get a professional photographer or even an artist to paint a portrait.

    Your house may fill up with medical equipment but these things will not make your home a hospital.  The machines and medicines are there to help you give your child the best possible life.

    No matter what the disease does, your child loves you and you love your child. Your child will be blessed to have parents who care so very much. Your love will consume you and it is endless. Love is your secret weapon.

    Your child will reveal to you what you need to do. If you can have the courage to be present, these children will teach you the meaning of life.

    Look for the beauty and joy. For me, our house is always filled with people, music and children, more so now than before Cal got sick. Please don't hide. The room where my daughter spends the day is the center of life in our house. Her nurses are like our family and we enjoy birthdays and Christmas and music and the Super Bowl just like anyone else, maybe even more than we did before. 

    Create physical beauty and keep it close: Our house has a gorgeous painting of Cal  and her sister hanging in the dining room, on the hospital bed where Cal sleeps there is a beautiful handmade quilt, and in the living room, I have the book 3rd graders at my son's school created about Cal.  These sorts of treasures will protect and inspire you.

    Write a blog, find old friends, tell anyone who will listen your story. The only way to endure grief is for it to become a story that you can tell yourself and  others. And if you are comfortable, use social media connect with the millions of other parents who are going through what you are.

    Knowing you are not alone will save you.

    To the Mom I Caught Staring at Me in the Hospital-Originally published in The Mighty



    Julie Keon

    I sensed someone watching me as I comforted my daughter after a particularly traumatizing dentist appointment at the Children’s Hospital. I looked up and saw you staring at us from across the waiting lounge. I didn’t pay much attention; I’ve grown accustomed to the curious eyes of onlookers. Our daughter was born seven and a half years ago, and after an abrupt lack of oxygen at birth, she changed the course of our lives forever. Perhaps, our lives unfolded exactly as they were meant to — they just didn’t unfold in the way we’d imagined or planned.
    I talked to my daughter, kissed her and hugged her. I was giving her a brief break before putting her through the next traumatic experience of the day — the car ride home. Cerebral palsy can turn a car seat into a torture chamber.
    I stood up to gather our things, my daughter in my arms, and it was then that I noticed you were holding an infant. It was difficult to know for certain how old she was. I knew immediately, though, that you were one of us. I knew that only recently your life had changed drastically and you sat here in this Children’s Hospital wondering, “How did we get here?” I should have recognized that shocked stare because I once had it, too. And I assume the man sitting next to you, looking equally tired and shocked, was your husband.
    I made my way toward the doors, and as I passed you, our eyes met and I smiled at you. You smiled back, and for a moment I knew you knew I understood.
    If I could, I would tell you — although you might not believe it right now — you will be OK. I would tell you to dig deep within yourself because you will find the strength and resilience somehow, and it will surprise you. I would tell you to honor your feelings and let the tears flow when they need to. You will need the energy for more important things than holding in emotions.
    I would tell you that the man sitting next to you might cope differently and he might even want to run the other way. But I would tell you to hang on because he is scared and he really doesn’t want to leave you. I would tell you to look after yourself so that you can care for your daughter. Don’t underestimate the power of good nutrition, exercise, sleep, supplements and an empathetic therapist.
    I would tell you that grief will come and it will confuse you because how can something that brings such joy also bring such sadness? I would tell you to let people into your lives to help you. Our children really do require a village to raise them. Access all the services and resources available. Find someone who can learn how to care for your child so you can have breaks and so you and your partner can go on dates — even little ones like a 20-minute stroll outside holding hands, sharing wine on the deck or even catching a movie.
    I would tell you that you know your child best, and no matter what you’re told by the doctors and other professionals, you know the answers. You will teach them about your child. At times you will question the validity of your intuition, but after a while you will become profoundly aware of how accurate your gut feelings are when it comes to your child.
    I would tell you not to be a martyr. Caring for your child will require tremendous focus and unimaginable energy, and it can burn you out and make you sick when you least expect it. I would tell you to let your guard down along the way so you can stay healthy in your mind and spirit.
    I would tell you to seek out other mothers like yourself. This is, indeed, the road less travelled, and you will feel alone along the way, especially in the company of healthy children and their parents. Yes, you will feel isolated, but know we are here. Sometimes you have to look a little harder but we are here. You can find us online, in support groups and wandering the halls of the Children’s Hospital.
    I would tell you that you will know far too much about the human anatomy, neurology, gastro-enterology, feeding tubes, pharmaceuticals and so on, than a mother should ever have to know. I would also tell you to do some research to inform yourself but don’t let the internet overwhelm you. Having some trust in what your child’s specialists tell you can be grounding. Other mothers and fathers of children like ours can be a wealth of information.
    I would tell you this isn’t an easy life. It’s tough, there’s no doubt about it, but you’re capable, and the rewards are great. You may never see your child graduate from a university, walk down the aisle or give birth to your grandchildren, but you will feel pure joy when your child laughs for the first time. You will celebrate the moment when you connect with your nonverbal child. You will call your spouse at work to tell him that she has gained 4 ounces because weight gain is always a struggle with our children.
    I would tell you that you will have to witness procedures and surgeries and suffering well beyond what any parent should ever have to bear. But, I would tell you that you will be courageous and comforting because your child will be experiencing far more suffering than any child should ever have to endure.
    I would tell you that your life will not resemble the life you had planned. It will be as though you landed in Holland instead of Italy, but after some time, you will adjust the dreams you had and this reality will be normal to you. You will dream new dreams.

    Friday, January 16, 2015