How a rare and fatal childhood disorder brought two families together and helped reinforce a life-changing decision

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Photo of Ronnie: courtesy Pawash Priyank

When you are told your newborn child has a life-threatening condition and needs immediate help, your world tends to get very small very fast. All you are focused on is making the right decision to save your child.

That’s what happened with Pawash and Upasana, the parents of Ronav (“Ronnie”) Kashyap. When they were told Ronnie had severe combined immunodeficiency or SCID, they rushed from their home in Folsom to UCSF. For good reason. SCID is also known as “bubble baby disease” because children are born without a functioning immune system so even a simple cold or diaper rash could prove life threatening. Children with this condition often die in the first two years of life so, in the past, many children were kept inside sterile plastic bubbles to protect them.

At UCSF Pawash and Upasana were told what their options were, including a new stem cell/gene therapy approach being funded by CIRM. Knowing that the life of their son hung in the balance they were desperate to make the right decision.

They talked to the medical staff and learnt what the procedure involved, and what the alternatives were. Then they went online and did as much research as they could. They came across the 2016 CIRM Annual Report and the story of Evie Vaccaro, cured of the same disease. That helped guide them.

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Dannie Hawkins and Ja’Ceon Golden at UCSF: Photo courtesy Santiago Mejia

And then, just to reinforce that they had made the right decision they met little Ja’Ceon and his great aunt Dannie Hawkins.

Ja’Ceon was the first child treated in the UCSF/St. Jude Children’s Research Institute clinical trial that CIRM was funding. The trial involves taking blood stem cells from the patient, genetically correcting the mutated gene, and returning the cells to the patient where they create a new blood supply and repair the immune system.

When Pawash and Upasana met Ja’Ceon he was already several months into his recovery and was doing so well he’d visited AT&T (home of the San Francisco Giants baseball team) the day before. They felt if his immune system could survive that level of public exposure there must be something to the treatment.

If reading is informing, then seeing is believing, and seeing how well Ja’Ceon was doing, and after talking to Dannie, Ronnie’s parents had no hesitation in agreeing to follow the same path.

“We felt immensely happy about our decision and felt more confident to move forward. There was no looking back after meeting her for sure.”

Happily Ronnie is doing wonderfully well today. He’s 18 months old, full of life and a ball of energy.

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Photo of Ronnie at 15 months: courtesy Upasana Thakur

Ja’Ceon is also doing very well. Dannie wrote to us recently to say:

“I am happy to say that the procedure worked for Ja’Ceon. He is doing great and just celebrated his 2nd birthday. Eleven months after his bone marrow transplant he had a great functioning immune system and was taken off of ivig (an immune system boosting therapy) as well. He has also started his immunizations. I am so happy that I enrolled him in the trial and study. I hope that we have opened up doors for other kids so that they can live a normal life just like Ja’Ceon is doing.”

Two families, two stories, one ending, a happy one.

 

 

 

 

 

 

 

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