Siem Around the World

Hi, i'm Siem! I'm nineteen months old. I live in the Netherlands and i have the classic form of infantile-onset Pompe disease. I am now doing very well and my parents are incredibly proud. They say i'm a fighter. Roaaaar! We hope it stays that way with so many new developments to beat Pompe! 

Eric Smit (The Netherlands)

Hello
I'm Eric Smit, 52 years old/young😀and live in the Netherlands
We have a holidayhome on the Veluwe were we ride bikes and walk in the woods a lot
For the future i hope with the enzym therapy and physiotherapy to stay stable

Beat Pompe Tessa ❤

Hey!

Our hope for the future is health! The biggest wish we have is to beat this disease! That our little big can feel how it is to live a normal life, without infusion  every week.

This is Tessa van der Duim, she is 7 years old, and lives in the netherlands.

Jonathan from the Netherlands

Hello! My name is Jonathan and I am 9 years old. I live in the Netherlands with my father, mother, brother Micha en sister Noa. I have Classic Infantile Pompe disease and every week I get my infusion at home. Of course I learn to read and calculate at school, but I also get physiotherapy and hydrotherapy here. I love to game and play with my brother and sister.

Jonathan 

9 years old

The Netherlands

Kind regards,

Margrieta Vedder

 

Tulips From Amsterdam

The Netherlands are famous for windmills and tulips (and pot, of course). Add Paula Waddell and Wilma Treur and you have a more complete picture of the Pompe Headquarters based in Baarn, The Netherlands. It’s the Ladies who make the IPA (International Pompe Association) strong! We all are looking forward to meet again in person and with all the other lovely Pompe folks around the world.

Together we are strong

This is a photo of me and my youngest sister at our weekly physiotherapy. We are sisters and we have both Pompe disease. We train every week two times at the physiotherapy. We love to be busy and keep us as strong as possible with good balanced exercises. We live in the Netherlands and our expertise centre will soon start with a research about a healty lifestyle for people with Pompe disease. As we know more, we let you know. Together we are strong.

Wilma Treur, Netherlands, 55 years

Time and Place

Every year when we, the Pompe community, commemorate Pompe day, I am reminded of the unfortunate fate of the man who discovered the disease which bears his name now: Joannes Cassianus Pompe.

I consider myself a fortunate person. With the exception of one major aspect, Pompe’s, I had all the luck in the world: loving parents, fine childhood, being able to study, interesting jobs abroad and in the Netherlands, extraordinary wife and two sons I’m very proud of. Good health, Pompe excepted. Being able to enjoy the good things in life. But most of all I was lucky to live in this time and place. Almost at any other time and in any other place I would not be here anymore.

How different was the life of JC Pompe.

Ster die straalt

Lieve Chantal
♡ 11 december 1984
* 6 juli 1985

Verhaal van een moeder die haar kindje verloor aan de ziekte van Pompe en Stichting Jet Brand oprichtte. - Story of a mother who lost her child to Pompe's disease and founded the Jet Brand Foundation.

Stichting Jet Brand, een Stichting met een duidelijk doel. Een doel ontstaan uit het verlies van mijn eerste dochtertje. Chantal werd 11 december 1984 geboren en overleed 6 juli 1985.
Zij overleed aan de ziekte van Pompe, voor velen een onbekende ziekte.
Met onze Stichting willen we graag meer aandacht om klinieken en organisaties te steunen.
Een ziekte die enorm veel impact heeft wanneer je eigen kindje dit heeft en veel te jong moet sterven.

Hoop...en dan de verpletterende uitslag 'De ziekte van Pompe". Een stukje blog op de website van Stichting Jet Brand. - Hope...and then the crushing result "Pompe's disease". A piece of blog on the website of the Jet Brand Foundation.

Wat een emotie wat een verdriet wanneer je daadwerkelijk alle spulletjes aan het inpakken bent om naar het Academisch ziekenhuis te reizen.
Kleertjes, speelgoed alles in tassen. Haar knuffeltje haar pyjamaatjes.De komende tijd wordt Groningen ons "thuis"
Ik ging samen met Chantal en een verpleegkundige in een taxi. Mijn toenmalige partner wilde graag een familielid mee. Tevens hadden we iemand nodig om met ons terug te reizen. Wat zou ons te wachten staan?
Niets maar dan ook niets herinner ik me van die rit.