Daniella Vandepeer shares her experiences of family life on a clinical trial including her motivation for joining a trial, some of the difficulties the family faces and what she feels is important to share with others considering joining a clinical trial.
Having had the opportunity to speak at the MPS conference this year, I wanted to put into words what being part of a clinical trial has really meant for us as a family. For those of you who listened to my talk, I was really quite honest, and incredibly optimistic because pretty much at the time, life was kind of plain sailing.
Summer had just started, Caleb’s health was in tip top shape and we were about to embark on a wonderful big family holiday with lots of hands to help us! So whilst everything I spoke about at the conference was fairly settled at the time, just one day later, we had some significant life changing news that would once again change things for both us going forward on our trial journey. Sure there are loads of things I spoke about that are still very much our experience and reality, like the huge unforeseen costs this has had on our life financially, the unplanned surgeries, the missed career opportunities and the constant need to be organised and on top of diaries and calendars.
You never can really fully prepare for how much time a clinical trial often takes up in your life, your mind, and your heart. We also have to take into account that life, as we know it, often throws us huge curveballs which there really is no other way to tackle but head on!
Our life changing news over the summer was another gift of life. During our trial journey, four years ago, as a family we embarked
Pre Implantation Genetic Diagnosis IVF, also known as PGD. We were incredibly lucky and were blessed with another son, but this time without any further concern that he would be affected by the MPS II ratio of a one in two chance of being affected. We felt like we were a complete family. So in the summer when we very unexpectedly found out that we had conceived naturally, all of those wonderful feelings you usually have on news like this were actually replaced with fear and worry and the prospect of some very lengthy and invasive genetic testing.
At the end of the summer once all of the testing had been completed, we received the good news that we were expecting a girl. Wonderful news on a genetic counselling front as no further testing would be needed throughout the pregnancy other than the standard 20 week anomaly scan.
A heavy load of information which joins the rest of the backlog of “medical” stuff you have to remember that comes with a clinical trial being a big part of your normal life. All of the above forms part of our extensive journey as a family living with a life-limiting condition, but taking a risk on something as scary as a clinical trial, and seven years later, seeing the both the benefits and impacts it all has on the course of how you imagined life would be. You constantly fit every piece together like a complicated puzzle, some days you ace it, and some days you are constantly turning your puzzle pieces around trying to fit them in to make it all work. Our motivation for being part of a clinical trial from the very beginning was life extending. One of the very first conversations I had with our trial doctor went along the lines of preserving brain power and having less white matter form, at the time this was just more medical jargon to decipher, but something I did understand and I remember starkly was the possibility of adding 15–20 years on a life which was predicted to end prematurely.
On top of all this, our doctor was very honest and answered all of our questions, he listened to our fears and supported us through a very tough time.
It is a very stark reality when all you know (remember this was seven years ago) is the natural history of a disease which was very bleak, and diagnosing doctors telling you important milestones like walking, eating, talking, understanding were probably unlikely to last. Having digested this information from the diagnosing doctor prior to trial, we already had a mission to supersede the difficult reality which was out in front of us.