Hannah Rose Ginion

We reposted this essay in honor of Hannah Rose Ginion who died December 28th, 2014 from globoid cell leukodystrophy (or Krabbe disease). We want to remember Hannah and acknowledge how she and her family advanced the cause of helping children affected by leukodystrophy.

My thoughts have been with the Pizzullo-Ginion family since word spread about Hannah's death on Sunday.

I can't put into words what it meant to be in the PICU with Cal when my oldest daughter, Camille, texted me with the news. The last time I saw Hannah she had been a patient here at CHOP's PICU.

Hannah had become a part of our family, and we all feel her death, even though I was the only one who had ever met her.

There are many children who are sick and quite a few mothers blogging and posting on Facebook about what it feels like to have a child who won't grow up. At lunch recently, I shared with Liz Scott (the co-founder of Alex's Lemonade) a woman intimately familiar with the power of grief and extraordinary daughters, the story of Hannah's Law and Hannah. Liz wondered why Hannah's Facebook page had inspired 70,000 folowers. It was a thoughtful question.

I suppose the thing that makes Hannah's Facebook page so special was that Hannah was so very beautiful. The pictures were amazing, but, if you ever had the chance to see her in person, you would stop breathing at how striking she was. The first time I saw Hannah in CHOP I can honestly say I couldn't stop staring at her and I think I told Vicki over and over again that this baby was just so lovely.

Then, there was Vicki herself.

Part of what makes Hope for Hannah's chronicle so unique was the way the disease was not the most important part of the story.

Now, to be clear, I doubt an ad during the Super Bowl could have raised as much awareness of leukodystrophy as Hannah. The thing was Vicki's story was not just about the disease, it was about a mother who loved her baby so very much. Each post was cheerful and fanciful. This was not denial, there was no pretending Hannah wasn't sick. But, what resonated with people was how Vicki found a way to mother with so much joy and happiness in the face of a disease that would have reduced most people to a pile of despair. Vicki made being Hannah's mom in the face of this diagnosis seem like something anyone could do. Hannah may not have been able to talk or walk or play, but Vicki cherished what leukodystrophy could not take away: the pleasure of listening to music with Hannah, holding your baby, giving her a bath, dressing her up in colorful outfits and putting ribbons in her hair.

Vicki made courage look easy. It was like Vicki was showing us all how to face the worst thing a parent can experience.

Vicki quit her job and did everything for Hannah. I know Vicki would say she just did what any mother would, but the fact is Vicki faced Hannah's diagnosis with such fierce love that she was not content to be there for her daughter. She even managed to change the laws of the state and make her daughter into a champion by using her story to save the children who came after her.

The only anger Vicki ever revealed was directed at the disease and how she wished that newborn screening laws had given her a chance to fight for Hannah.

People unfamiliar with Harrisburg politics may not fully appreciate the miracle of this legislature voting unanimously to do anything. Vicki had no lobbyists advocating for a disease most people could not even pronounce.

So when thousands of people sent letters and notes to Vicki and every news outlet in Pennyslvania ran a story about Hannah's death, it was comforting that so many people could see what had made Vicki and Hannah so special.

Looking back, it is funny to think that Vicki reached out to me because she thought I might have something to show her about caring for a child with leukodystrophy. In the end, I doubt I ever did anything for Vicki or Hannah, but, they taught me how to be amazing and brave and use love for a child to defeat this terrible disease.

So, I sit here in the PICU with Cal. Now that Hannah's suffering is done and I watch what Vicki must face, I know she will be able to go on and that means I will be able to go on too.

What Hannah's Law means: The law will mandate the addition of six lysosmal storage diseases to the newborn screening routinely performed on every newborn using a blood prick heel test. The new disorders include Fabry, Krabbe (or globoid cell leukodystrophy), Pompe, Niemann-Pick, Gaucher and Hurler Syndrome. With early detection and treatment, the long-term effects of these diseases will be less detrimental to children. Patient advocates (including the Calliope Joy Foundation) have supported legislation to add ALD (or adrenoleukodystrophy) to newborn screening in Pennsylvania . Presently, there is no newborn screening available for MLD (metachromatic leukodystrophy). However, in 2016, researchers will pilot a blood prick test with support from Shire Pharmaceuticals.