Gabby Waddington’s Story

Apparently it’s reasonably common for premature babies to need a transfusion or two during their early weeks. However, the amount of blood our little twins, Gabrielle and Jasmine, continued to need alerted medical staff to a very serious problem. Eventually we received the devastating diagnosis that they both had DBA.

Jasmine was the smaller and the weaker of the two, and at about six months old she became dreadfully unwell. We spent the worst night of our lives watching her rapidly deteriorate from a ferocious case of pneumococcal septicaemia. At about 4am it became unbearable to watch – it was clear that she could never recover from the damage the disease was doing. The decision was made to take her off life support and she died in her Father’s arms.

Only a month or so after we lost Jasmine, Gabrielle was struggling to the point that we took her home to die too. There were three or four more critical episodes over the next couple of years, but each time we were somehow thrown a lifeline. She’s still with us 13 years later.

As time went by our focus shifted from day-to-day survival to considering the long-term implications of repeated blood transfusions. Towards the end of the first year we investigated various options, including the possibility of having another baby. By using embryo selection, we hoped we could offer Gabby a cord blood transplant from a perfectly matched donor. That idea didn’t work out. We were left feeling that we had no real alternative but to accept that a cure was out of reach.

Fast forward five or six years and out of the blue we were introduced to Jess and Jeff Bond, whose son Angus also has DBA. I will never forget the day we enjoyed Sunday lunch with Jess, Jeff and family because it was the day that I started to believe that my greatest wish just might come true.

I had recently written my New Year’s wish-list, and at the top was ‘find a cure for Gabby’, although I had no real belief that it was possible. But that afternoon Jess determinedly told me that she’s going to find a cure. The calm but intensely focused way she said it absolutely floored me – it took everything I had not to burst into tears.

The Captain Courageous Foundation has given our family real hope that our precious Gabby will live a long and healthy life. We are just so excited to watch the progress of the research the Foundation is funding.