Category Archives: Life-Stories

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)

Russell Silver Syndrome Life Stories: Brian

My name is Brian. I was born just outside St. Louis, MO. My birth weight was 3 lbs., 15 oz., and I was 15 ½ inches long. My Mom is 5’1” tall, and my Dad is 5’9” tall. It wasn’t until I was 9 months old that I was diagnosed with Russell Silver Syndrome. My parents never held me back, and I started kindergarten when I was 4 years old.

I was always the smallest kid in my class, but either I didn’t realize it, or I didn’t care. When I was 7 years old, my family moved to the Denver, CO area due to my dad getting transferred with his job. I adjusted well and quickly made friends. Honestly, that’s never been a problem for me. I have a good sense of humor and was always considered to be the witty and clever kid in my class.

Being small always drew attention from other people, and I relished it. I was also born with a natural talent for playing drums. I started playing when I was 4 years old, and by the time I was 5, I was traveling with my parents gospel group. I’ve never really thought of my size as a hindrance, but as a way to get people to notice me. I felt blessed because while some kids fought to stand out from the crowd, I automatically did thanks to RSS.

My doctor started me on Human Growth Hormone shots when I was 8 years old. While I didn’t enjoy having shots every day for 7 years, I appreciated the results. I went from growing about 1 inch per year to about 4 inches per year on the shots. The only doctor that would treat me for RSS was located in Kansas City, MO. So we made several trips a year from Denver to Kansas City to check in with the doctor and see how I was progressing. I was an only child until I was 11 years old when my parents decided to take in foster children. My brother and sister (who were both adopted by my family as babies through the foster care system) are both average height.

I played both baseball and basketball all the way through middle school, but it was obvious my talent was in playing drums. I have asymmetry and the left side of my body is bigger and longer than my right side. I wore a lift on my shoe until I was 12 years old when I had my right leg lengthened 2 ½ inches. It was a long and painful process, but I’m glad I had it done.

I continued on through middle school and high school and was a very popular kid wherever I went. I was never ashamed of my size and I didn’t shy away from making friends. I found my identity through music and playing drums. My high school and college years were really a great time in my life. I moved to Nashville, TN in 1997 to play drums professionally, and I did that for about 7 years.

I was fortunate enough to have seen 48 states and several different countries through my travel with music. I had a few average height girlfriends throughout my school years, but I didn’t find the love of my life until I was 29 years old.

I met my beautiful wife Jenny online through a dating website. I had narrowed my search to include only women that were 5 feet tall and under. My adult height is 5 feet tall, and I decided I wanted a girl whose eyes I could stare into without having to get on a stepladder.

Jenny met that criteria (as well as many other important criteria) and we began to date. Within 11 months of first meeting online, we were married. Five months later we became pregnant. I had always wondered if I could have children, and if so, would I possibly pass on RSS to them. I didn’t really know any other adults with RSS, much less any that had children. Thankfully we had a beautiful little girl with no traits of RSS. She is now 6 years old and growing like a weed! While Jenny and I both expect her to end up being a little short, we also expect her to be taller than us.

My Christian faith plays an extremely large part in my life. I was raised in the church and am very thankful to my parents for the heritage I was given. We are active in our local church and have a very solid social network comprised of friends and family. I work in the call center for a major research cancer clinic and I’m continuing to work my way up the corporate ladder. I don’t feel that my size has ever hindered me from getting where I want to go professionally. I’ve lived the ups and downs of life just like anyone else. But overall I’m extremely blessed and wouldn’t change a thing.

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Russell Silver Syndrome Life Stories: RSS in a Rural Community

RSS-People.org Kim Taylor gives a brief personal account of what it is like to live with Russell Silver Syndrome in a rural community.

Being Born

I live on the mainland of the Orkney Isles, from prenatal scans the local doctors knew I was going to be small at birth ,so as with any complicated health case, my parents were advised that I should be delivered at the Royal Aberdeen Maternity Hospital.

This hospital is a 45min plane journey, which is covered by NHS. Due to varying circumstances my mum was on her own, reading a book, while she was having contractions.

I was 4lb 2.5oz approx at birth and had to stay in hospital until I was 7 weeks old and weighed 4lb 7oz!! My parents could not visit me due to the distance, expense and also having another child.

Throughout my childhood, I have often had to travel to Aberdeen to be seen by specialists because of having RSS, as they did not often visit rural Orkney in those days, as paediatricians from Aberdeen only visited our area twice a year.

Gaining Independence

On the plus side of living in a small island I am quite well known by many in the community so I have never faced many issues with people being rude etc. about my lack of height.

I moved out of my parents home at age 17 and with family and friend support I continue to lead an independent life.

I get to travel away from the island a few times a year, apart from any hospital visits, and to visit the nearest decent shopping area in Inverness which is a 90min ferry and a 2.5hr drive away!!!! How wonderful to have the internet for shopping!!!

Getting Mobile

At present I am looking to get a new car and do have a major problem in that one of my local motability car dealers  does not keep alot of cars in stock so I am having trouble finding the right car as with RSS I need to sit in the car I would like to check for fit, reaching pedals, clear rear view etc.  I was fortunate that another person had ordered a car and I was able to sit in the car and try it out for size before it was sent to the new owner, now I only have the problem of trying to get hold of the same model to test drive!

The Only RSS Person in Scotland?

Also living in a rural area makes it very difficult to attend various events to meet others with RSS. As far as I am aware at present I am the only adult in Scotland with RSS but I really hope to contact more in time.

For more details about the beautiful island where I live, visit www.visitorkney.com

Since writing Kim has been in contact with a person living in Shetland Islands who has Russell Silver Syndrome.