LATEST
NEWS

Rona's FUN LAB was selected as the 2025 Innovation Network Gathering Next Step Honoree. This recognition, which was determined by a vote...

Thanks to your generosity, Rona's Rockin' Memorial Toy Drive 2025 was a huge success! We were able to double the value of the donation...

Today, children's hospitals around the country will celebrate Christmas in July.   During Rona's treatment, Santa brought Rona matching...

September 15, 2023 Last night, Rona Solfryd Edwards left this world the way she came into it: slow at first, and then in a flash. She was...

August 9, 2023 My updates have been spaced a bit more because we are still in a holding pattern. We did get some good news on the viral...

July 15, 2023 I've gotten feedback that my updates are generally quite positive and optimistic. Sometimes I don't share the hard stuff...

September 1, 2023 Yesterday we rang in Rona's sixth birthday. Earlier this summer, we were told this would be a day we may not see so it...

August 18, 2023 Medically speaking, this wasn't our greatest week. We still don't have cell counts, the viral counts ticked up again, and...

June 9, 2023 Rona officially engrafted on Saturday (Day 16), which means my cells have begun to make cells in her marrow! This week her...

August 1, 2023 I know I missed the update last week and a few of you have reached out to see what is going on in our world. The truth is,...

July 20, 2023 We wanted to let you know that the combination of prayers, reiki, healing vibes, holy water, novenas, mantras, etc., that...

June 16, 2023 This week has been a rough one. One of the key risks for transplant of kids with Aplastic Anemia is the reemergence of...

July 8, 2023 Another week, another rollercoaster. We still don't have any cell counts, which is to be expected, so we are in a bit of a...

July 6, 2023 Earlier this year, every time someone asked me how I was doing, Sir Elton John popped into my head singing, "I'm still...

June 23, 2023 Over the weekend, we enrolled in a second clinical trial which involves taking T Cells from a third party donor, activating...

June 3, 2023 The big news from this week is that Rona is starting to make cells, which is great news. It looks like she is engrafting in...

May 19, 2023 Yesterday at about noon, Rona officially received her transplant of stem cells. It was a highly uneventful day with lots of...

May 12, 2023 Thank you for the many messages and good vibes you are sending our way. It may take a while to reply to them all, but we are...