Benny and Josh, the trial goes on!
Updated: Aug 5, 2021
Celebrating Birthdays. Benny's 5th, Josh's (almost) 4th, and Evan's recent 2nd birthday.
One of the hardest parts of going through something difficult is going through it alone. Right after Benny and Josh were diagnosed, I felt so incredibly isolated. From the outside, we were a beautiful growing family. Two cute faces peered out of their double stroller when we went about our day-to-day. People would smile at us, and I just wanted to cry in response. It felt so lonely, to be in so much pain, that no one else could see, and no one knew about. Over the past three years, I went from having no one to reach out to, to having an immense amount of love and support.
Today, we went into Dayton’s Children’s hospital to begin the many assessment tests, to measure the changes of the new genes on Benny and Josh. It will be the one-month follow-up for Josh and the three-month follow-up for Benny. We have full days at the hospital this week as they measure and evaluate. They are the first humans in the world to have this novel gene therapy for Canavan Disease, and everyone is excited to see how it will take effect.
When we first began this journey to get this treatment for Benny and Josh, we tried a shorter route called “compassionate use”. It was a way to use a drug that had not been put through a clinical trial, for patients that had no other options. Benny and Josh fit that description, but due to outside forces, we couldn't go that route. I had planned to make their medical records public so that the medical community could use the information to one day move forward for a full clinical trial so that all children with the disease could be treated. But we weren’t able to go with that route, of compassionate use. So what would have taken 6 months, took three years, and instead of just Benny and Josh getting treated, the far-off plan I had dreamed of happening one day, for all children to be able to get treated… is happening now.
Today, as we waited to see Dr. Lober, their neurosurgeon, a beautiful little girl, Margherita, came out of the office. Margherita is from Italy, she also has Canavan disease. Shortly after we went public, looking for support for the treatment, Margherita’s family reached out and began fighting alongside us from across the Atlantic, in Italy. Her family even reached out to the pope to advocate for the trial when we needed it. When we met, we spoke different languages, but I felt completely understood. I feel like we are all part of one family. Like us, Margherita’s parents know exactly what it feels like, to feel so alone, to walk around, with a beautiful child, with a devastating prognosis.
I am overwhelmed with emotion. These past three and a half years have been grueling. It has been so intense in every aspect, my body, mind, emotion, psyche, spirit… I have worked harder than I knew it was possible to work, and still, the work never feels finished. Everything we did, everything we went through, for Benny and Josh, will go even further. Right now! To help other children, to help Margherita, to give hope, to give life.
This past Sunday marked Benny’s 5th birthday (and we’re just weeks away from Josh’s 4th) to top off this emotional upheaval. In the past, the boys’ birthdays were a cruel reminder that we were another year closer, to no longer having my children here on this earth. This year though is different. This year, Benny and Josh got the gift of a new gene and new hope for life. I felt conflicted, as his birthday came. It’s taking some time, but I realized I can finally let go of the mourning that came with each birthday candle and finally celebrate. Not just on the outside, but truly in my heart. I can let the pain go, and start this year anew.
Tomorrow at 11 am Margherita, the daughter of Sara and Thiery will be starting her surgery. Please have her in your prayers, for a full recovery and great results. Please let her know, she is not alone, we are with her, by her side.
Thank you for your ongoing love and support,
Jennie, Gary, big brother Michael, Benny, Josh, little brother Evan, and baby Raqueli
The boys and their Hebrew names as follows:
Shalom Binyamin & Yehoshua Natan, ben Shayna Toyba
שלום בנימין בן שיינע טייבע ויהושע נתן בן שיינע טייבע
Cure Canavan Fund is a registered non-profit 501C3. Donations to Cure Canavan Fund are tax-deductible. EIN# 83-4489648
Top row from Left, Dad - Thiery, Mom - Sara, Dr. Paola Leone, Jennie, and Gary. Bottom row, from left, Margherita, Josh, and Benny.
Dr. Paola Leone celebrating with Benny on his Birthday.