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Filming the MDA TV commercial DEXA Bone Scan

It’s been a long time since I posted an update, I’ve been really busy. I had a lot of hospital appointments in the school holidays including a wheelchair reassessment, DEXA bone density scan, a meeting with my Paediatrician and a meeting with the Doctor at the Sleep Clinic at Waikato Hospital.  Also during the holidays was the filming of the Muscular Dystrophy Association TV commercial, which I am in with Judy Bailey (she is the Patron for the MDA).  I’m looking forward to seeing the ad on TV next month!

I am still fundraising for the MDA, True Colours and Christchurch Earthquake Relief Fund, I have raised $1480 so far.

DEXA Bone Scan

As well as being diagnosed with photosensitive epilepsy and migraines last year, I was also diagnosed with obstructive sleep apnoea, this means I stop breathing when I’m asleep and now I have a special machine (called a CPAP machine) that helps me to breath when I’m asleep.  The DEXA scan done in January was to check my bone strength because my bones are at risk of developing Osteoporosis because of the Muscular Dystrophy and the steroids (prednisone) used to help retain my muscle.  The scan found that I do have Osteoporosis, so now I have to be really careful not to break any bones.  Last month I asked my mum to get me a Medic Alert bracelet.  I have one now, but there is not enough room on it for everything!!!

The Attitude Awards Night in December was incredible, a great event to be part of.  Attitude Pictures have asked if they can do a full episode of their programme about me.  We have started filming for that, which has been cool.

At Cheltenham beach with my brother Toby

I had some fun at the beach in the holidays.  Last week I went back to school, it was great to see my friends again.  It’s my birthday on Wednesday this week, I will be 10.  I’m trying not to think about it much so I don’t get too excited

Attitude Pictures filming me playing my guitar

I was nominated by the Muscular Dystrophy Association for the Attitude Pictures TVNZ “Attitude Awards” and I am a finalist!  This means that there will be a story about me on the TVNZ show “Attitude” which screens on Sunday mornings on TV One at 8.30 am and I get to go with my family to the Awards Evening, which is a fantastic event being held in Auckland at the Viaduct Events Centre.  The film crew from Attitude Pictures came to my house today to film me for the programme.

The Attitude Awards showcase the achievments of New Zealanders with Disabilities.  I am a finalist in the Youth Category.   To find out more see Attitude Pictures Limited and TVNZ Attitude Awards.  I was nominated by the MDA for my fundraising efforts.  So far this year I have raised over $900 for the Christchurch Earthquake Relief Fund, True Colours Charitable Trust and the Muscular Dystrophy Association.

I recently wrote a poem at school, we were studying metaphors.  It was published in the Muscular Dystrophy magazine “In Touch”.

MDA In Touch Article