For the 10% of CF sufferers who cannot benefit from modulator therapy, the wait continues. And it’s hard. See some reasons why here.
Isaac had another episode last week that we cannot understand, the tests continue. For now, we hope that he can enjoy his first independent trip away from home that is planned for before Christmas, the festivities that will follow (no doubt including my happy tears on his safe return) and then some answers. Aside from these worries, we have promising news on gene therapy trials he may be able to join soon - I try to manage my excited desperation x
