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
Wednesday, January 28, 2015
Tuesday, January 27, 2015
Sunday, January 25, 2015
Tuesday, January 20, 2015
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.
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.
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.