Tania is our proud NSW State Branch President, FSHD Global Ambassador & Community Liaison and Administration Assistant. She is full of warmth, positivity and laughter despite going through a tough 12 months.

This is Tania’s Story

I was diagnosed with FSHD when I was 12, but I’ve had the symptoms for as long as I can remember.  As a child, I was always slower at sports and it was an effort to catch up to the other kids. I was tired, slow and I couldn’t smile.  It was very frustrating. I had terrible balance but loads of determination – it took me a while but I finally managed to ride a bike after all the falls and that was a great day.

The symptoms got worse as I grew older – making raising my arms difficult and painful. At 23 I had an operation to fuse my shoulders straight.  I was very excited as I would have straight shoulders and be able to move with no pain. The operations were successful and my determination was evident here too – even when I was in an upper body cast I’d still go dancing with my friends at our local disco!  I just wore a big jumper to cover it and got out on the dance floor with my friends.

But jokes aside, life with FSHD is really tough.  As the weeks and years go by life gets harder as I keep losing piece by piece of my physical self.  Every month I realise that I can’t do something that I could do last month.  It’s really heartbreaking.  I’ve also had to watch my mum and family go through it – They have the FSHD gene too.  I’ve spent the last ten years as my mum’s carer, and this has been so hard watching her waste away before my eyes.

Mum sadly passed away on 30 April 2018 because of FSHD wasting away of her muscles she was unable to swallow and breath. This insidious disease took her life away. Mum was a fighter until the end. Mum had no energy and was finding it difficult to breath she had her eyes closed when I asked my daughter to come and say good-bye to her Nonna. Francesca gave mum a kiss on the head and said “I love you Nonna so much!” My mum using all the energy she had left opened her eyes looked up at her granddaughter and said “I love you too amore so much!” They were mums last words.

I gave birth to a healthy daughter in 2004.  By then scientists had identified the faulty gene for FSHD, and though IVF we were able to block the gene so my beautiful 13-year-old daughter is FSHD free and doesn’t have to go through what I have.  I am the proudest mum. My daughter brings light and love to my family and I’m so happy she’s bright, happy, healthy and FSHD free.

I’ve been involved with FSHD Global for about 8 years now.  Three of those have been as a volunteer and the last 10 months as an office assistant.

Working with the team at FSHD has given me such a sense of purpose.  I’m desperate for a cure and through this role I feel like I’m helping everyone else across the world who is also living with FSHD.  I really I love my job!

The fact that the Foundation exists and has done so much in its short life also gives me so much hope that a cure will be found.  As a sufferer you can feel so helpless and I know that the Foundation will find a cure, it’s just a matter of time.  When I meet other people with FSHD through my contact with the Foundation I realise that like me, they are relying so much on the Foundation for a cure.  Hope is something that we all share and we’ll never stop hoping.