A Trial of Grace

Many of you have heard by now that I have decided to keep a blog about my experiences participating in a clinical trial for a drug that could be a treatment for PKU. I have been incredibly blessed by the number of people who care about my experience and the outcome of the trial. So blessed in fact, that I have had trouble updating everyone who wants to be kept in the loop (a great problem to have!). I have decided to keep this blog so that I can keep everyone informed who wants to be. This includes personal friends and family but also those in the PKU community who, like me, have a lot of hope invested in this trial.

A little background

Before I begin sharing with you about the trial, I want to give you all some background about me, my experience with PKU and what PKU is for those who may not know.

PKU (Phenylketonuria) is a genetic metabolic disorder that affects about 1 in 16,000 people. Those of us with PKU lack the enzyme that breaks down one of the amino acids in protein, Phenylalanine. If untreated, PKU can result in mental retardation or severe mental deficiency. As of now, the only known treatment is a severely strict low protein diet. A low protein diet means no meat (believe it or not, it is possible to be American and have never had a hot dog at a baseball game), no dairy, no nuts, no soy, no beans and very little grains. This is a diet that I have followed my whole life and believe me, it has not been an easy journey.

My name is Tricia Jackson and I am a 25 yr old graduate student studying Christian Counseling. PKU has always been a huge part of my life and has been a significant part in shaping who I am today. While PKU has been a challenge, some days more so than others, I am thankful that I was born with it. I know I have missed out on some things, but I also have been able to experience and learn things that many people do not get to experience. It is difficult to put all of those things into words, but PKU has taught me to trust God with my present and my future in a way that many have not had to. I have also been able to see God’s blessing in my life very clearly. The Lord allowed me to be born into an incredible family who helped me to deal with the challenges of PKU. He gave me great friends who look out for me and encourage me. When I was born, my parents were told that I would struggle with math in school and that certain tasks would be hard for me. The Lord blessed me with great grades in school, a bachelors degree with honors and the ability to go to graduate school.

PKU brings a lot of challenges as well and those challenges tend to change with each new phase of life. As a child, I sometimes felt insecure about bringing my “special food” to friends houses or birthday parties. As a teenager, I worried about fitting in and not standing out too much. As a college student, I struggled to follow my diet with the busy and unpredictable lifestyle that college brings. And as a young adult, I struggle with trying to keep my diet healthy, low protein and filling (a very difficult thing to do!).

A New Hope (and yes I do realize that is also the title of Star Wars IV, thank you brothers)

In April of 2015, I received a mass email that I almost deleted. Fortunately, I decided to read it first. The email was about a trial of a drug that could potentially increase the amount of protein that my body can handle. It would be a daily injection that would give my body a substitute for the enzyme I lack. I decided to look into it, honestly, I was thinking I wouldn’t qualify or wouldn’t be able to afford it, but what could it hurt to find out more information? Several emails later, I find out that I do qualify and the study would cover ALL of my trial related expenses, including flying me to the nearest location (Louisville, Kentucky). Now, as of yesterday, July 30. I am officially enrolled in the trial and have received my first injection of the drug (so far no bad reactions to it!).

This has been a crazy experience for me because I never really thought that there would be treatment for PKU other than a strict diet. While I have no idea what opportunities this drug will give me and if it will even work, knowing that it has a good possibility of working at least to some extent is blowing my mind. You mean that there could be a day when I get to try peanut butter? Or be able to order a salad WITH cheese? Or get to finally taste what REAL pizza tastes like (I know, I have some BIG dreams, people)? This is why I am calling this blog “a trial of grace.” I have been given opportunities to dream of things I was always too scared to dream. I was content (OK, if we are being honest, content most the time) with the idea of having to follow a strict diet my entire life, but God in His infinite grace is opening doors in the fields of PKU research. He is providing me with a hope I never thought I had. I knew one day, in heaven, I would receive a new body (with all the right enzymes), but I never really thought I would have this opportunity now. And believe me, I am fully aware that this might not work, but the idea that research is where it is now, is in itself a hope that I never thought I could have.

Thanks for reading! And I promise the next blogs won’t be this long!