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Please do contact us if you do have an idea or wish to discuss anything else with us.

Twitter Jenson’s Journey@jensons_family

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Jenson's Journey

2 weeks ago

Jenson thoroughly enjoyed his Easter 🐣 Egg Hunt Cotswold RDA today. The volunteers and staff are amazing and set up a fabulous fun event yet again. ... See MoreSee Less

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Jenson's Journey

2 weeks ago

This is the DXA full body scan of Jenson and don’t be alarmed by the image of his head area he hasn’t grown a beak! Jenson is a very active child and cannot keep still for a moment, so this is why his head area looks distorted together with his right arm.

This was Jenson’s first DXA scan but we were alarmed to find out that he should have had a scan before he started taking steroids this time last year.

Steroids can affect bone health and we are concerned as we know he has insufficient vitamin D levels which also impacts bone health.

Bone health is so important for Jenson’s quality of life and it is known that progressive muscle weakness affects the bones.

Unfortunately those with Duchenne often have to have spinal surgery to help with curvature of the spine caused by scoliosis. Another problem is the increased risk of fractures.

Jenson is currently on a high dose of vitamin D and he will need to have regular blood tests to ensure his vitamin D levels are okay.

We are now awaiting the consultants report of today’s scan so will keep you posted. ... See MoreSee Less

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