TRAPPED IN AN OLD BODY

THE CHILDREN WHO AGE RAPIDLY

WHAT IS PROGERIA?

Progeria is one of the rarest diseases in the world. It affects less than 1 in 8 million children.

RAPID AGING

The children age, on average, 8 times faster than the rest of us. And, sadly there is no cure.

LIFE EXPECTANCY

is 12-14 years. Many do not make it to adolescence, but several live till their late teens.

WHAT CAN YOU DO?

We arrange reunions and wish-trips for them, so that their biggest wishes come to fruition.
What is Progeria?

THE DISORDER THAT TURNS KIDS IN TO 90-YEAR-OLDS

PROGERIA HUTCHINSON-GILFORD SYNDROME

Progeria is one of the rarest disorders in the world. It’s a disease that affects less than one in eight million children. At the present moment, we know of 123 children who have Progeria – in the entire world. 24 of these kids live in Europe.

123

CHILDREN WITH PROGERIA WORLDWIDE

24

OF THEM LIVE ACROSS EUROPE

12

YEARS IS ASSUMED LIFE EXPECTANCY

0

SURVIVE TILL ADULTHOOD (30+)

THE SURE SIGNS

WHAT CHARACTERIZES PROGERIA?

When children with Progeria are born, they look like a completely healthy baby. But, around 8-18 months old, the parents notice something is not right. Through DNA tests they discover that their child is not like all others – and, that there is no cure.

“Enjoy your time with them”.

8-20 months

LOSS OF HAIR

The children start losing the hair they have, and never get it back. Most of them prefer to wear hats or wigs.

8-18 months

BLOOD VEIN

One of the most characteristic traits is a very prominent blood vessel that runs down and through the forehead.

8-16 months

TIGHT SKIN

The skin becomes translucent, and you start to see all blood vessels. Another sign is that the stomach skin becomes tight.

10-24 months

BONE STRUCTURE

The face gets a recognizable shape, with bony nose and recessed jawline. Lack of subcutaneous fat.

3-5 years

ARTHRITIS

By the age of 4, severe arthritis is present, and many struggle walking. All suffer from hip dysplasia.

3-7 years

SMALL STATURE

Children with Progeria stop growing at an early age. Most are 39-43 inches tall, even when they reach their teens.

YEARLY REUNIONS

EVERY YEAR THE EUROPEAN CHILDREN WITH PROGERIA COME TOGETHER

In order for us to send out an official invitation to the European Progeria families to come for a reunion, everything has to be in place up front. This takes a lot of effort and kind souls, and we are dependent on people like you to make reunions a reality. We work very hard to make this an unforgettable experience.

PLANE TICKETS

The families come from all over Europe, and are dependent on direct flights from where they live to Oslo, due to their sick child.

HOTEL

To accommodate all of the children and their families (160 people), we need 65 hotel rooms, plus an activity room at the hotel.

TRANSPORTATION

We need transportation from/to the airport for all families, and 2 buses to/from all activities during the reunion.

FOOD & DRINKS

Nobody should be hungry during our reunion, so a lot of food and drinks are consumed during our 6 days together!

EVERYTHING IS PAID FOR

100% UP FRONT

It important for both the Progeria child, and their family members, with reunions. To be able to talk to others who understand just what you are going through, is priceless.

We arrange a week of fantastic adventures and activities for them, and do everything to make sure they forget about the illness when they come to the reunion.

Many of the families struggle financially, because having a sick child takes such a toll. When we invite them in to the reunions, we make sure everything is paid for, so they don't have to worry about a thing - and just be able to relax for a whole week. There are many kind souls who help us when we arrange reunions - and YOU could be one of them!

YEARLY REUNIONS

HIGHLIGHT OF THE YEAR

Progeria children go through a lot of bullying and pain in their life, so it’s important for them to have something to look forward to every year. That is why we arrange yearly reunions for the European children. This is a very important week for them, because they meet with their best friends – who are just like they are.

Thank you for your contributions!

FUN FUN FUN!
YEARLY REUNIONS
WITH THE HELP OF KIND DONATIONS

Now you can get an insight to the European reunions for the Progeria children. In this video you can get to know a few of the kids better.

Click play-button to watch video!

YOU CAN MAKE A WISH COME TRUE!

With your contribution, children living with Progeria have a chance to fulfil their biggest wishes in life. Every little helps. Thank you!