My heart is in my throat. Rose has started having seizures. The first one, her mom had to perform CPR to bring her back. She’s ok now, but every day that goes by is a day that we should be treating her and these other children.
Some people look down on how I speak about neurodevelopmental, saying that it’s not scientifically accurate. These kids suffer more than just development delay. We’re not talking about how sometimes we can see regression, things can get worse, and the potential of death. Well, now Rose and our family came very close to that.
Please help us get to a treatment faster. We must fund biomarker, ic50, and delivery experiments, as a pilot safety study this summer. This work only happens with you!
Donate here:
https://lnkd.in/g-8yTnVm
#tocurearose #raregeneticdisease #hnrnph2