Once again we are home from Cincinnati and seeing Dr. Wong and her amazing team. Connor's decline last year was slight (it took him a second longer to do just about everything).
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Connor tried to get off the
gurney after the last MRI. |
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Versed is a great help when
doing a cardiac MRI. |
Connor did very well this year. His time even improved from getting up off the floor! His time declined for going down stairs unassisted and he seemed shaky doing one foot at a time on the stairs but he was able. The most significant physical decline is between 6 and 9 so we feel like we are on borrowed time each time we go. Dr. Wong told us 8 1/2 they tend to see more decline so we are a little more prepared for that next year. He does have a slight sway back now too.
Connor did the cardiac MRI and there was no change from 2 years ago!! Whoo hoo! He was also much more pleasant waking up.
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| Connor doing the DEXA! |
Connor was able to do the full body DEXA scan too!!!! We have been trying to get him to complete it for two years but he was too scared. This year we did a social story and showed him pictures of other boys doing it and he was able to complete it. He even kissed the machine! He got lots of loot for doing all his hard work too.
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Connor and his loot
after a long trip! |
The good news is that we are on a list for Sarepta's control arm (natural history) for Eteplirsen when they start testing the kids. And the better news is that it's in Boston. So we are crossing our fingers Connor "gets in" by meeting the criteria of the study. His Autism complicates things but we hope it's not a barrier for cooperation for him to complete the testing. Dr. Wong thought that he was doing so well he probably won't qualify because he would do better on the 6 minute walk test (a good problem to have) so he would test out of criteria. We will see.
If all goes well and he meets the criteria, then Connor will be part of Sarepta's control arm until his compound for his exon deletion (SRP-4050) is available where he would switch to being "on drug"
(if he qualifies). And we hope against hope that it's as effective as Eteplirsen and that it happens soon.
The quick version of explanation is seen here on Sarepta's website:
http://www.sarepta.com/our-pipeline. Connor has deletions of 51-53 which means that he needs to have exon 50 skipped. It is the 4th compound called SRP-4050.
Connor did so well on the plane too! This was the first time we did the less expensive option of having layovers and he did great!
We also found out the day we were leaving that we had an anonymous donor who paid for our hotel! We simply cannot believe the generosity of the people in our lives. Whoever you are . . . thank you from the bottom of our heart!
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Connor and his "puppy"
by his favorite hospital item:
a volcano!
Connor of course picked the largest "puppy" from the gift shop but he sure earned it! See you again next year Cincinnati!
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The cost
to participate is $135 per person or ($540 for a foursome). There is a cash bar for lunch and no alcohol
is allowed on the course. This includes:
