Category Archives: Media

RSS Teen’s Quest For A Dream In USA

Hello, everyone! My name is Michela Anderson, and like many of you, I have Russell Silver Syndrome. I’m petitioning to the writers of ABC’s “Once Upon a Time” to cast me in the role of Thumbelina. This would be the perfect vehicle to raise awareness for all growth disorders, raise funds for the MAGIC foundation, and show children like us all over the world that no matter how small a person is, anything is possible.

My story is that I was born a month premature at 3 pounds, 4 ounces. The doctors told my parents that I would be blind, deaf, mute, and basically, a brain-dead vegetable. Obviously, none of that was true. I was actually three months old before someone else re-diagnosed me with RSS. My new doctor started me on growth hormone injections at two years old, and I took them every night for eleven years, ending up at 4’11’’. At seven years old, I was diagnosed with precocious puberty, and had to start a monthly regimen of Lupron shots. I stopped taking them when I was 13.

I try and help RSS parents, especially new ones, understand more about the syndrome and what life for me has been like. This is what I tell them: “There is always hope. It may seem difficult now, but it will get better. It always gets better. The most important thing is to stay positive, because it will help you through the journey, and it will help your child in the long run. Keep going, and remember that you’re not alone. There are thousands of us in the world, and you’ll find us if you look for us. Sometimes, the greatest stories come from the tiniest bodies.”

Raising awareness for growth disorders is so important to me, because although I ended up healthy and happy as anyone could be, some children are not so lucky. With so many doctors not knowing the details of these disorders, the children aren’t properly diagnosed, or treated. Other times, the family can’t afford the medicine or specialists needed. By bringing attention to these disorders, we may be able to help children and their families all over the world affected them. If we can get the attention of the writers and convince them this is a good idea, we might just be able to make a huge difference.

If you care about raising awareness as much as I do, here are a few ways you can help:

1. Sign the petition here: http://www.ipetitions.com/petition/thumbelina/

2. Share the petition with your friends! Facebook it, youtube it, blog it, whatever!

3. Tweet this: “MICHELA ANDERSON AS THUMBELINA! #onceuponatime #michelaisthumbelina @michelasings @AdamHorowitzLA @jollychan4”

4. Join the facebook page! “Michela Anderson as Thumbelina on ABC’s Once Upon a Time”

The Real Thumbelina Documentary on ITV1

For those of you in the UK who missed the above documentary on ITV1 on Monday can watch it on the ITV Player.   It follows 4 year-old Amelie and her parents journey to the USA to find out more about Russell Silver Syndrome.

It was great to see both sides of the growth hormone debate and as a non-GH RSS adult it’s always hard to see parents worrying about their children not being ‘normal’ if they don’t have treatment, especially having gone on to achieve everything I hoped to do and more as a person 4ft 4″ height.   It was very much appreciated to see Zillah’s contribution that you can be 4ft -odd and still be ‘normal’.  I hate that term ‘normal’.  People with Russell Silver Syndrome, are that, people, who need that bit of extra support throughout all stages of life.  That said, what would any of us do if we had a child in the same decision and most of us are aware that it is people’s own choice.

Personally I would have liked to see more non-GH adults participating, say a comparison of what life is like as a RSS person who has had GH as opposed to RSS people who have not – but then that could be a documentary in itself.

A more balanced documentary than expected.  Definitely worth a watch and it’s great that awareness of Russell Silver Syndrome has been raised on a mainstream terrestrial channel and to a wider audience.
Here’s the link: The Real Thumbelina Documentary »

(This documentary  is only available to view in the UK and watch-able for another 28 days)

Review: Raised Awareness of Russell Silver Syndrome on Jeremy Kyle

Today’s Jeremy Kyle show on ITV1 features four children with various disabilities to raise awareness of each of their medical conditions.  One of these children is Mollie, a three year-old with Russell Silver Syndrome.   Her Mum, Kaya, chats to Jeremy about what life is like having a young child with RSS.

In an odd sort of way, it’s comforting to hear such a similar experiences that others go through with the syndrome.  I remember hearing about the stories of being ‘failure to thrive’, the insensitive comments and actions from some members of the general public like being touched or picked up like a doll.

Jeremy’s questioning of Mollie’s Mum was frank and sometimes close to the bone, though nothing parents or people with RSS haven’t been asked before. It was great that all parents the chance to promote their child rather than the disability.  And great for generating more awareness of Russell Silver Syndrome in general.

The RSS feature is about 14 minutes in you can watch the programme on ITV Player here until 30th July 2011 »
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Womans Own – Russell Silver Syndrome Article

On page 60 of either this week’s or last week’s edition of Woman’s Own there is an article about a couple with a daughter with Russell Silver Syndrome.   You can find the feature on and around page 60.

It doesn’t really tell us RSS-er’s anything that we don’t already know, but it’s always nice to see the profile of the syndrome raised.

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What do you think about the article?

RSS-Diagnosed Journalist Needs Your Help

Hi there! My name is Pete and I am an English freelance journalist and a RSS person. I have just finished my studies and am now entering the big wide world. for the first time. I’m on the look out for that elusive first job but as you can imagine competition for work is incredibly fierce.

I decided to set up an Audioboo account.  Audioboo is similar to Facebook but rather than uploading photos, you upload audio files (sound recordings). On my CV I mention that I have experience interviewing people and when I came across Audioboo an idea flashed into my mind. I hope to upload audio files of interviews I have conducted so that I can include a link to the site on my CV and employers can instantly find evidence of my interviewing ability.

This is where you come in!! I would love to interview a fellow RSSer over the phone and record it. The interview would be friendly and informal and could cover anything you like.

The following is a link to my Audioboo page and if you click on the ‘Welcome’ you will get an idea of what the site is all about: audioboo.com/peteguest.   If you would be interested in being interviewed please email me at peteguest59 [at] hotmail.com

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