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.

#EatCake & #HelpKids

Recent Posts

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    Tuesday, January 27, 2015

    Sunday, January 25, 2015

    Only 150 seats left

    We have not even gotten to Super Bowl Sunday and just 15 tables of 10 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-infant 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 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.  With the gift of time and learning from Cal when I speak with parents, 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 leukodystrophy, 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

    Being a Mom: My 15 Dos and Don'ts for Helping a Friend With a S...

    Being a Mom: My 15 Dos and Don'ts for Helping a Friend With a S...: There is a blog article making the rounds on Facebook for the Do's and Don't of what friends of parents with children in the hospi...

    Happy birthday G

    In the leukodystrophy world, for kids with late infantile MLD, 5th birthdays are a big deal. After 5, kids like Cal are on borrowed time and beating the odds. Each time the doctors told us 5 is just a number, a statistical average, the less I believed them. Cal making it to five put her in a different category. 

    And so today a little boy in Italy celebrated his 5th birthday with blood work and needles and scans.And his mother and the rest of us who  know this story could not be more pleased. 

    This little boy who has the same disease as Cal, a boy whose sister did not survive beyond age 5, this boy will eat cake and blow out candles and go to kindergarten because of a miracle, and I get to witness it and share in it all, and Cal has already made a difference.