The Fifth of July

July 6, 2017

 

 

 

 

Cal received her official diagnosis of late-infantile onset metachromatic leukodystrophy  (LI-MLD) on July 5th, 2012.

 

Pat and I had returned to the hospital to confirm the test results and meet one of the two doctors at CHOP  who treated children with leukodystrophy.

 

The young doctor's name was Amy Waldman.

 

To be sure, going back to the hospital struck me as a futile exercise.

 

Cal, who was just 2, was not expected to survive beyond the age of 6. It seemed to me there was nothing to be done but plan for our Make A Wish vacation and "enjoy the time we had left."

 

My rage at the doctors for having no way to save Cal left me betrayed by the promises from all those children's hospital telethons soft-focus celebrities blathering on about miracles.

 

When people offered to pray for Cal or advised me to cling to hope, I wanted to scream how they were fools.

 

Hope and miracles had become a cruel joke in a world where Cal could not be saved.

 

During our meeting that day five years ago, the meeting that I had not wanted to attend, but the meeting that would change my life: Dr. Waldman made me a promise.

 

Actually, it was more solemn than that, it was more like a vow. 

 

I had explained to Dr. Waldman that I understood Cal would die, but I had read enough to know that one day MLD  might be cured. 

 

And all I wanted now for Dr. Waldman to do was to find me when there was a way to help kids like Cal.

 

When that day came, I asked Dr. Waldman to find me so that I would "get on a plane to Helsinki or Paris and meet the child the doctors would save from Cal's fate. And if I am really fortunate," I told Dr. Waldman through my tears, "this child will be a little girl with dark eyes and curly hair and she will remind me of my Cal." 

 

Dr. Waldman nodded, she would find me when that day came..

 

When I asked Dr. Waldman, how long it would take to cure MLD, Dr. Waldman guessed: "we are 20 years away."

 

In this vision of the future, Cal would be gone,  and I would be much older.

 

It was a dream that would help me fall asleep at night. I would dream of meeting the little girl like Cal and her mother who would not have to suffer as we had. 

 

Over the next months, to cope with our anguish, Pat and I started raising funds for CHOP and Dr. Waldman.

 

We did not know what to do with the money from the cupcake sales and with the checks our friends and family sent in the mail. Pat and I had talked about a mural project in the hospital's roof garden or even a gift to the palliative care program.  It was on  the year anniversary of Cal's diagnosis with the publication of Dr. Biffi's paper in the journal Science about a groundbreaking gene therapy, Dr. Waldman made a new  suggestion.

 

It would not take 20 years to defeat MLD, Dr. Biffi's research promised to change what it meant to have MLD a year after Cal's diagnosis. Dr. Waldman assured me that Dr. Biffi's research "was the real thing."

 

"You know, you need to take the money you are raising," Dr. Waldman said. We had about $20,000 at that point, and "the next time we find a child who is eligible for this trial in Italy, you can help that family to Italy."

 

Dr. Waldman's idea  was absolutely ingenious. We could leverage the money we had to support families and research at the same time. It would take years to raise a million dollars for a gene therapy trial. Getting the children to Milan could be our investment in a medical breakthrough that could prove to be a miracle.

 

I will confess it was not easy to do this. My first reaction when Dr. Waldman shared this idea was to say:

"Clearly, you have mistaken me for a brave woman."

 

Nevertheless, Dr. Waldman persisted. 

 

She reminded me that "Every single family in the trial will have sacrificed one child for their chance to save a younger one. " There was no doubt in her mind that I would help a child if I had the chance.

 

We would have to wait another year to learn if Dr. Waldman's faith in me was misplaced. 

 

On Facebook, I heard that Cecelia Price, a six month old from Omaha, Nebraska needed to get to Italy for the clinical trial. The minute I read about how the Prices were selling fireworks to raise the money to get to Italy, I sent an email to the foundation's newly formed board. Within 48 hours, I was at the bank getting  ready to send a check to the Prices. 

 

Over the next four years, we helped 10 children get their chance at miracles, but the first, would be Cecelia.

 

We all understood it would take years to know if the treatment had helped Cecilia. Gene therapy experts don't call the treatment a cure so much as slamming the brakes on the disease.

 

Children with LI MLD don't start to show symptoms until the age of 2 or 3, and at the time, Cecelia was the youngest patient Dr. Biffi had treated.

 

Over the next three years, we watched and waited from a distance.  Cecelia got through her second and  her third birthdays  with none of the disease's most devastating neurological and central nervous system damage. Cecelia's parents, Amy and Brad,  posted photos and updates on-line.

 

From a distance, we watched Cecelia run and play and jump and sing, all the things that Cal had stopped doing years ago.

 

By the winter of 2016, as plans were underway for the Cupcake Gala and after the national media exposure with the CBS Sunday Morning story, we believed it was time to introduce our foundation's supporters to Cecelia.

 

And, in a way, Pat,  the kids, including Cal, and I were ready to meet Cecelia.

 

As we looked forward to the gala, the gala's co-chair,  Matt Hammond and myself, two parents who had witnessed what MLD had taken from our daughters, were convinced the star of the night would be a little girl with Cal and Loie's disease walking up on stage.

 

So that night before the gala, when Cecelia came to visit our home and ate homemade macaroni and cheese (Cal used to eat this favorite recipe of Pat's) and Cecelia  played on her i-Pad (the one we had sent her when she was in Milan) and then she kicked soccer balls with my son PJ in our backyard just as Cal used to.  And for just a second, it was as if being around Cecelia, I was transported to an alternative universe where Cal still got to run and play.

 

How I wanted to hug Cecelia  and tell her how she had given me a purpose in life, I resisted this urge.

 

It was enough just to watch this beautiful creature play with toys in our house.

 

And the most incredible moment of the night was something  that happened so quietly, so unexpectedly.

 

I had been anxious to have the Prices and Cecelia see Cal.  I think Cal is beautiful but I also realize that others might find Cal's illness frightening.

 

I need not have worried about Cecelia and her parents and brother being blind to Cal's beauty. In a moment of pure love and astounding grace, Cecelia decided that Cal was her new best friend and played with her as she would any other child.

 

Even though Cal was not feeling well, struggling to get through her evening feed, and there were tubes coming out of Cal's belly, Cecelia was unfazed. Cecelia covered Cal in a blanket and brought over toys to try to get her to play.

 

Then, in that moment, all the pressure of the last six months of planning for the gala lifted.

 

You see,  I had been so busy  writing letters and raising money, I had almost missed the fact that my wish from five years ago had been granted far ahead of schedule.  

 

 Not only had I lived long enough to see a child with Cal's disease saved from Cal's fate, but this child was a little girl with curly hair and dark eyes who bore a striking resemblance to Cal.

 

But the greatest gift of all was that  in my wildest dreams I had never dared hope that Cal would live long enough to see such a child.  And that this child would be able to recognize how special Cal is.  

 

And I am so very grateful to  Amy and Brad Price for being kind enough to allow me to share in their miracles, even in a little way, even it is just because I get to tell Cecelia's story.

 

So yesterday, on the 5th anniversary of Cal's diagnosis, Pat and I met with the Calliope Joy Foundation's board to discuss how we would distribute the $130,000 the foundation had raised from the gala. We talked about making a gift of $60,000  to Leukodystrophy Center of Excellence at CHOP with its 35 specialists that now treats 44 patients each month and provides $50,000 to fund gene therapy research. 

 

I updated the board on how the Children's Neurology Society would be showcasing our work with the children's book Loie's Disease as a model for how  to explain neurological conditions. Then, there was a new video about pediatric palliative care  that was now being used by lobbyists to advocate for Medicaid and children's hospice.. 

 

All of this had happened in the five years since we heard the word leukodystrophy for the first time and met the young neurologist named Amy Waldman. 

 

And it was five years  later and  Cal is still alive.

 

And the sadness and grief that resides with us now has to make room for pride and gratitude and awe at what the little girl who was not supposed to be alive today has made possible.

 

And so, five years after the worst day in my life, I got to hold my Cal and tell her how she has helped so many people and given me a way to go on by making sure other boys and girls will get a chance to run and play and sing.

 

And while this is not the story I wanted for her, it is still a story with beauty and joy and hope. 

 

And, five years after the worst day of my life, I get to witness miracles. 

 

 

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