I’ve been thinking several times lately how after about a year, most parents won’t have to get to this point with this disease again. Talk about turning the tide. Everyone in the United States who will be able to receive it should be able to within the next year. Then, children after that who are diagnosed, hopefully early or at least earlier than where Joyanna is right now, will start receiving the enzyme before they begin to decline or some before they even have their first seizure. That’s mind-boggling to me. The doctors can now say at that first meeting, “This is what your child has but there is a treatment!” WOW! So many sweet, innocent, beautiful children delivered from what would have been a certain death sentence just a couple of years ago. WOW! I’m so thankful for researchers, doctors, specialists whom God has given wisdom and understanding of things that can be so helpful to so many people.
Everything has gone smoothly with the infusion this morning. Joyanna has strong vitals once again and is currently sleeping. Before each infusion, they pre-medicate with Tylenol and Benedryl. This will help with any discomfort or reactions to the infusion. It also helps tired little ones drift off to a nice sleep to help 4 hours pass more quickly. It’s smart on all levels. We will be here until about 2 pm this afternoon. Please pray that this infusion can help Joyanna regulate back to a steady point. You better believe I will be watching very closely this next week for all signs and symptoms or any new changes. Seeing her yesterday doing a little better instilled a new hope again.
I’ve been thinking several times lately how after about a year, most parents won’t have to get to this point with this disease again. Talk about turning the tide. Everyone in the United States who will be able to receive it should be able to within the next year. Then, children after that who are diagnosed, hopefully early or at least earlier than where Joyanna is right now, will start receiving the enzyme before they begin to decline or some before they even have their first seizure. That’s mind-boggling to me. The doctors can now say at that first meeting, “This is what your child has but there is a treatment!” WOW! So many sweet, innocent, beautiful children delivered from what would have been a certain death sentence just a couple of years ago. WOW! I’m so thankful for researchers, doctors, specialists whom God has given wisdom and understanding of things that can be so helpful to so many people. Comments are closed.
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Philip & Joyanna's Story
December 17, 2009 -
August 25, 2018 Philip's memorial slideshow and funeral service can be viewed by clicking on the "Philip" tab at the top of this page. You can read more about Joyanna's story by clicking on the "Joyanna" tab at the top of this page.
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March 2024
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