We are all in this fight together!
If you have been following my blog, you may recall some posts about Pompe patients in New Zealand and Australia being denied enzyme replacement therapy (ERT). Our friends in the southern hemisphere are fighting with their own governments to approve funding for Myozyme – the life saving treatment for Pompe patients. And, if you follow my blog, you know – the stuff works! However, the bureaucrats are not convinced. We will continue to fight for our fellow Pompe warriors in New Zealand and Australia – I’m sure there will be calls for letter writing, so keep those typing fingers in tip top shape!
Allyson: “When it comes time to book my plane ticket I will start to feel the pain of knowing I have to leave my family for such a long period of time. My little boys - Ben age 9 and Josh age 7 - get sad if I just go away overnight, so it will be very hard for them. It will be very hard for all of us. I'll miss their birthdays, their piano recitals, their sports on Saturday mornings. Having said that, this is a huge opportunity which will hopefully not only extend my lifespan, but also my quality of life. 6 months out of a lifetime isn't so much. We are a Navy family so we are used to being separated for long periods of time. But it has always been my husband who is gone, sometimes up to 8 months at a time. Sometimes I get envious of his travels - this time it is my turn! We're kind of looking at it like it is just another deployment.”
In the meantime, two of our friends are coming to America, to participate in a clinical trial of a new ERT drug from BioMarin. They will be in excellent hands because they will be Dr. Barry Byrne’s newest “lab rats” at the University of Florida. Allyson Lock from New Zealand and Brad Gibson from Australia will be touching down at Orlando International Airport as soon as all their travel documents are in order. The clinical trial is expected to last 6 months and they will undergo infusions every two weeks during that time. They are traveling half way around the world for a life saving treatment because their government won’t approve funding for it. Thank goodness for clinical trials and the welcoming arms of the University of Florida.
Brad: “For me to move away from my life for an extended amount of time like this is very hard. My oldest boy Jesse is 12 years old and changing monthly, Daniel is 9 years old and too smart for his own good and Elissa is 6 years old going on 16 and learning ballet so whilst she has attitude she's a sweet little girl. I know the boys are going to miss me as I normally try to get to all their Rugby Union games and to some of Elissa's ballet performances when I can. My wife Ellen works as a physiotherapist and is the glue that holds us all together, but as I've been getting weaker she has had to do more, but I'm afraid with me gone she will shoulder more of the burden of running our house, looking after the kids and working on top of that. I'm hoping I can come back from America a lot better than when I go over. It’s a chance I have to take because my own country won't make the ERT treatment available, so whilst it's a tragedy that I have to leave my wife, my family, my job and my life, I don't see I have too many other choices if I'm to stay around for my family.”
It is our hope, that once their governments see how effective this treatment is on their own citizens they will reconsider funding ERT. But for now, Allyson, Brad, and their families can rejoice in the fact that they will receive the life saving treatment – even if it means spending 6 months away from home.
I couldn’t be happier they are going to get treatment and am thrilled they will be “right up the road” at the University of Florida. Guess we’ll have to make Gator fans out of them! Go Gators!