Jeune Syndrome Foundation

“Make Jeune’s Known”

About the Jeune Syndrome Foundation

About the Foundation

The Jeune Syndrome Foundation has been set up by a Jeunes family for Jeunes families.

On this site you will find current information on what Jeune Syndrome is, why it occurs and common symptoms.

You will also find a page of biographies written by people who have experienced or live with Jeune Syndrome.

Did you know the Jeune Syndrome Foundation has leaflets telling you all you need to know about Jeune’s?

You can download a copy HERE.

Our Community

The Jeune Syndrome Foundation Facebook Page is a great place to come and chat and we would welcome any suggestions you might have to make this support group effective in supporting you and your family through your Jeunes journey. You can talk to other people living with Jeunes from all over the world who will be only too happy to share their experience and advice with you.

If you have any ideas or suggestions on how to improve the group or website. Please get in touch with the details below.

“Lets Make Jeunes Known”

From our Facebook page.

Just to let you all know Valerie the founder of Jeunes Syndrome Foundation is quite poorly in hospital. So if she doesn’t apply to your messages straight away I’m sure you will understand.
I hope you will all wish her a speedy recovery.
From Valerie’s Mum, Linda
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How many of our mums does this resonate with? How can the foundation help you overcome these barriers?

Writer unknown

"When you have a family member with a diagnosis or a disability, it affects every single thing about your life. I often feel people on the outside don’t really see the full picture. They see a young man that can’t walk, they see a wheelchair, they see a mobility car... but they don’t see life once a front door is closed.

It’s very physically demanding having a child who is not mobile - it’s lots of lifting and carrying and helping which results in utter exhaustion and pain. It’s relentless battles and fights with healthcare professionals and services to ensure your loved one gets the what they need. It’s going to bed at night questioning decisions you’ve made, second guessing your choices, wondering if you’ve done enough.

But on top of all of those physical and practical issues that just become normal life, it’s the other side of this that’s the most draining - the emotional side, the acceptance, the adaption. This changes people, you see, and it changes them irrevocably. It changes friendships, it changes marriages and relationships. You become a different person, a different friend, a different partner to the one your other half fell in love with it. Trying to accept a diagnosis of significant magnitude causes a ripple. You deal with it differently, often at different times - sometimes it makes you and some times it breaks you and there’s no way of knowing which you’ll be. You just hope for the best.

Your child doesn’t just get a diagnosis, your whole existence does too.

To the world you just look like a Mum who has a child in wheelchair. But I’d tell you that’s the easy bit."

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Some end of the week fun for everyone - if you could have anybody as a celebrity patron for the foundation who would you choose and why? ... See MoreSee Less

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