A Last Wish: Teen with Rare Disease Dreams of French Coast
Fifteen-year-old Diede Euverman faces a harsh reality: her rare, progressive muscle disease, Pompe, leaves little hope for recovery. But instead of succumbing to despair, Diede and her family are fighting for her last wish – a trip to see the blue sea one final time.
Diede, a resident of Velp in the Netherlands, needs an adapted camper van for the long journey to Narbonne, a seaside resort on the Côte d’Azur. The journey is more than just a vacation; it’s a beacon of hope, allowing Diede to create lasting memories and experience the warmth of the Mediterranean Sun before her condition progresses further. Her goal aligns with a larger mission: raising awareness for metabolic diseases. This year’s Serious Request, a major Dutch fundraising event, focuses on these often-overlooked illnesses.
Diede’s deterioration has been swift. While she once received weekly infusions, long journeys were simply not possible. Now, with a focus shifting to quality of life, the family is determined to fulfill her dream. “Three quarters of children with metabolic diseases do not reach their eighteenth birthday,” says Ellen Euverman, Diede’s mother, adding, “That has to be different.” The family yearns to give Diede this one special journey while they still can.
Rallying the Community
This valiant fight to fulfill Diede’s wish is resonating with the local community. Last Sunday afternoon, despite her own failing health, Diede kicked off a special campaign. Shemit. Van Leeuwen adds, “I want to motivate others to take action. If I can do this, you can also contribute.”
Personal trainer Martijn Huijnen from Arnhem and former top wrestler Dries van Leeuwen from Driel pushed their physical limits. Crossing the finish line after completing a grueling six-kilometer trek, pulling a tractor tire weighing 40 kilos through Arnhems Buiten. “Diede’s story touched me deeply,” says Huijnen, whose mother sadly succumbed to ALS, another debilitating muscle disease.
“It’s not just about tackling this challenge; it’s about everyone pitching in to make Diede’s dream a reality,”
Huijnen and Van Leeuwen have a personal connection to this cause. “If I can do this, you can also contribute,” adds Van Leeuwen, emphasizing the power of community action.
A Journey of Hope
But the campaign is about more than financial support.
“We hope her story inspires action,” says Ellen Euverman. “There’s little awareness for metabolic diseases, but raising not just money, but awareness is vital.” The heartwarming solidarity generates support and prepares for the poignant reality of navigating the complexities involving special facilities at the destination.
The family’s earnestness has touched many hearts. Donations are flowing in to ensure Diede can experience the warmth of the Mediterranean sun one more time. It’s a bitter reality that a final trip has become synonymous with fulfillment.
Join Diede’s journey. Watch her appeal via the video below or donate via her campaign page:
[Embed video here, link to Diede’s campaign page]
Together we can help make Diede’s wish come true and turn pain into a moment of lasting happiness
What inspired the community to rally behind Diede and support her family’s fundraising efforts?
‘## A Wish for the Coast: A Family’s Fight to Fulfill a Teen’s Dying Wish
**Interviewer:** Joining me today is Ellen Euverman, whose 15-year-old daughter, Diede, is battling the rare and progressive disease Pompe. Ellen, thank you for joining us.
**Ellen Euverman:** Thank you for having me.
**Interviewer:** Diede’s story has captured the hearts of many. Could you tell us a little about her wish and the challenges your family faces?
**Ellen Euverman:** Of course. Diede has always dreamed of seeing the blue sea, but her condition has made even short journeys difficult. Pompe is a metabolic disease that weakens muscles progressively, and unfortunately, it’s limiting Diede’s mobility.
**Interviewer:** You’re trying to raise funds for an adapted campervan to make this dream a reality. Why is this trip so important for Diede?
**Ellen Euverman:** This isn’t just a vacation; it’s a chance for Diede to create lasting memories and feel the warmth of the sun on her skin before her condition progresses further. [ [1](https://www.rarediseaseadvisor.com/patient-columns/distance-rare-disease-patients-travel-treatment/)]. It’s a beacon of hope amidst a difficult reality.
**Interviewer:** You mentioned a lack of public awareness surrounding Pompe and other metabolic diseases. Can you elaborate on that?
**Ellen Euverman:** Absolutely. Three quarters of children with metabolic diseases don’t reach their 18th birthday. [ [1](https://www.rarediseaseadvisor.com/patient-columns/distance-rare-disease-patients-travel-treatment/)]. There is a crucial need for more research, funding, and public understanding of these often-overlooked conditions.
**Interviewer:** You’ve received incredible support from your community. Can you share some examples?
**Ellen Euverman:** We’re so grateful for the outpouring of support. Last Sunday, a local fundraiser brought the community together to raise awareness and funds for Diede’s trip. It’s truly heartwarming to see so many people rally behind us.
**Interviewer:** We wish Diede and your family all the best on this journey. Thank you for sharing your story with us.
**Ellen Euverman:** Thank you for having me.
