From Shayla Sulack of Tehachapi, Ca., mother of Sheersha:
“With the statement released today, I feel hopeful. Since first hearing about the setbacks, leading up to the eventual cancellation of this treatment, I never really knew where we stood, wondering if my child would have to wait even longer. Would we have to discuss other options? Was this no longer going to be on the table? What did that mean for the future for her growth and health?
“With this news, I'm hopeful that by giving the licensing back that they can do everything in their power to see an end date. Waiting was never the worst part, it was wondering if the waiting would ever end, or was this on hold indefinitely. This is movement, at least in the forward direction.”
From Andrea Fernandez of Edmonton, Canada, mother of Jakob:
“This is wonderful news thanks to the efforts of many and hopefully looking to honor the many families that have been anxiously waiting for their babies and young children to go on to live a normal and productive life. Today their voices have been heard.”
From Monica Nava of Merced, Ca., mother of Clementine:
“We are grateful that Orchard is releasing the treatment back to UCLA and UCL and we are grateful that they will continue to provide support through “financial support and material resources.”
“We are aware that there are still a lot of things we will learn along the way as far as timeline and qualifications for being treated under ‘compassionate use,’ but we are hopeful. We feel heard today and we are hopeful that our children will be able to be treated soon.”
From Alysia Padilla-Vaccaro of Corona, Ca., mother of Evie Padilla-Vaccaro, who was treated successfully with OTL-101 eight years ago.
“Today is the start of getting more families made whole. My hope was always that Orchard would succeed in acquiring FDA approval, but business constraints were the controlling factors, not the science.
“I am sure this was a very difficult decision on the part of Orchard and especially that of Dr. Bobby Gaspar, being that this was a project that was dear to him. I am very grateful that they decided on what was best for the children and are pushing this treatment forward by relinquishing the license.
“It is my hope that this treatment will become commercialized in the near future to reach more of those in need. But today I am just happy to know that my fellow SCID parents can finally breathe a little lighter and see the light at the end of the tunnel.”