January 26, 2007 mcfadyena


Trey will begin ERT on Monday, February 5, 2007.
When I first found out the actual date, it wasn’t a big deal. We had just gotten home from KinderGym and there was a message from Donna at the MDU to call her. So I called her. We knew it was coming. But then it sunk in.
This treatment could save my child’s life. It could add years of happiness and health to Trey’s life. The knowledge that this treatment existed and that Trey might be able to get it is what gave us hope when we were first diagnosed, just under a year ago. It is the treatment that we began fighting to get for Trey on July 24, 2006, when Elaprase was approved by the FDA in the US. One date is forever etched in my mind, and that is Valentine’s Day of last year, when we were first told that Trey might have an enlarged liver. This new date is a date of hope, and it begins on February 5, 2007.
Thrilled? Yes. Thankful? Unbelievably. I have heard about and from other Canadian parents whose children have MPS II and at this point are not able to get ERT for their children. It makes me so sad to think that we live in a country which denies our children treatment that has been proven effective and has been approved in countries all over the world. And because of this it makes me even more thankful that we live in BC and that our Ministry of Health has agreed to help Trey.
These are the names of the folks in the ministry (that I know of) who have helped us and who have made ERT a reality for our son in a country which does not have a program to pay for or approve rare drugs for rare diseases (in any straight forward, time effective, rational, or respectful way). These people found the loop holes and jumped through hoops in order to help our son. These are amazing and wonderful people: Bob Nakagawa, Bill Mercer, Suzanne Solve,n Woodrow Turnquist, George Abbott, & Gordon Macatee.
We also would not be here without the help of our doctors, Dr. Sylvia Stockler and Dr. Lorne Clarke (and all those who helped them). They filled out the forms, had the conversations, and advocated for Trey so that we can be here today. And all of the above listed people (some more than others) put up with my incessant and unending emails and phone calls, demanding that Trey begin ERT now. Thank you for your patience and for being so understanding.
Thank you to our MPS community. You understand. I would not be sane if it were not for you. Most of you are very far away and some I have never even spoken with on the phone or met, but you have helped me more than you know. Besides the lifesaving support you give me of knowing what questions to ask what doctors with regards to what appointments and surgeries, you give me day to day advice on what works in any given situation. And when I have no one to talk to because none of my long standing friends and family have a clue what it’s like to go through this, you are there and you know my tears and frustrations and excitement. And since some of you have also been through the fight to get your child ERT, you have helped me and shared with me your experience, so that we could be here today.
And last, but most definitely not least, thank you to our family and friends. You have been so supportive and helped in every way that you could. You have researched and listened and hugged and held us and made meals, and put in countless hours of babysitting so that I could write one more email or make one more call. We honestly could not have done it without you. We are forever thankful for your help and love. You have rallied around us. We love you.
ERT details… The staff at the MDU will be getting an inservice in the next week to teach them everything they need to know about Elaprase and infusing Trey, which is why Trey will not start treatment for another week and a half. The hospital already has the Elaprase (which is very exciting for me to think about…possibly because it’s like tens of thousands of dollars in a few little vials which will alter the course of my child’s life…liquid gold). On the day, we have to be at the hospital at 7:30 am. Once we’re there, Trey will have his Emla (numbing cream) put on and get a once over to make sure everything is everything while the pharmacy mixes the Elaprase. Anyways, after everything’s ready, Trey will follow Elaprase protocol and start at 8mL/hr (he is not going to be premedicated). Every 15 minutes, the rate will be increased 8mL/hr until he reaches a maximum of 40mL/hr. And that’s that. Yahooooooooooooo!!!!!!!!!!!!!!!


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