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A lot has happened since the last update. There have been X-rays, discussions with the genetics team regarding NF1 and how that looks going forward, and a visit to the fracture clinic resulting in his casts coming off! Henry’s legs are free! There are still some investigations needed to determine if a bone treatment is necessary, so hopefully, soon enough we will know more. Another big update is that we now have a provisional date for Henry’s Hickman line being removed! Yeeeeo! He has had this in for so long now, it’s going to be amazing and weird to not have this, but obviously more amazing than weird! Overjoyed and so thankful!

Check out the video for a full update and some photos below.

Hope you are all safe and well. Love you all.


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