Post Op and Clinical Trial News

Jack’s surgery went as planned. They removed the old hardware and replaced it with new, did a bone graft of his ribs (7 cm long!), and used wire to wrap the rods and bone to his vertebra. They then added the BMP or bone protein. He is now fused from octiput to c6. He has taken well to his halo. The first couple of days were tough of course, complaining that he was stuck meaning that he no longer can move his head, but after a couple days he learned how to move with it and is now sitting well, walking (with assistance of course), and can even scoot with it.

The other news we received is that the FDA has approved the third phase of clinical trials in the US. The boys would not qualify but I’m not sure we would want to put them in the trials anyway. We would have to relocate to the west coast and we wouldn’t even be sure if they would be getting the drug or the placebo.
Ph3 Society Announcement _ Decker_final

We will keep you updated with any more news on the boys as we get it. They are going in for orthopedic x-rays on Thursday and we will let you all know how it goes. Thanks for all the prayers and staying in touch.


About Alison

Mother of twin boys whom both have morquio syndrome
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2 Responses to Post Op and Clinical Trial News

  1. Luci B Hersey says:

    Jack seems to be such a good natured little guy. God Bless him for all he and his brother has been though. We certaintly pray their lives will improve in the future.

  2. Sally and John Anderson says:

    Hi Alison, Matt, Taylor, Jack and Hunter,
    So happy to hear that the surgery went well and that Jack is adjusting to the halo.
    It can’t be easy, but God bless those little guys. You can’t keep them down. What a great picture of Jack. It is such a wonderful smile. I pray that the time flies by and it will soon be off. You have many prayers coming to you and I just know that it will help. You are the greatest Mom and Dad. Stay strong and keep the faith. We are all in your corner. Love you, Aunt Sally and Uncle John

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