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Stories – from diagnosis to adulthood

Have you recently received a diagnosis of RTS for a child or relative?

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The charity connects RTS families to create a support network and provide a sense of community for people who may be facing similar challenges and can relate to each others’ situations.

You may be looking for useful and relevant information about the syndrome, and what life can be like for individuals with RTS and their families. On the Resources page you’ll find comprehensive information about many aspects of RTS.

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Raising a child with a disability

It is sometimes hard to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. We love this poem which so effectively helps to convey some of the feelings and reactions RTS parents may have experienced themselves at times along their RTS journey.

Welcome to Holland by Emily Perl Kingsley

When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The Gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.”

“Holland?!?” you say. “What do you mean Holland?? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.”

But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay.

The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around…. and you begin to notice that Holland has windmills….and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy… and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say “Yes, that’s where I was supposed to go. That’s what I had planned.”

And the pain of that will never, ever, ever, ever go away… because the loss of that dream is a very, very significant loss.

But… if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things … about Holland.

©Emily Perl Kingsley. All rights reserved

Stories

  • Jack’s Story

    Jack’s Story

    Even though all of these Jack was very poorly from birth with lots of different problems (breathing difficulties, poor feeding, vomiting after every feed, very slow growth etc). I spent the first month in hospital with him, followed by his first year full of milestone…

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  • Amba’s Story

    Amba’s Story

    I am 20 years old and I was diagnosed with RTS when I was 15. I did a supported internship in 2019; this involved NHS placements and college once a week. At first I wasn’t sure if I was comfortable with the journeys to college…

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  • Aara’s Story

    Aara’s Story

    Aara was born on 30th October 2016, and was diagnosed with RTS on 24th January 2018, and how that changed our life for the better as a family. Aara is a fun, loving, head strong 4-year-old with a beautiful smile and a good flock of hair. Her…

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