A Heartfelt Thank You to Stichting Seppe for Their Generous Support and a Tribute to Seppe’s Life
The Loving Loic Foundation is deeply honored to receive a generous donation from Stichting Seppe, a foundation born from love, hope, and the determination to improve the lives of children affected by PKAN and related NBIA disorders. We extend our heartfelt gratitude to Hanneke van Maren, who reached out from Holland, and the entire Stichting Seppe team for their unwavering support in the fight against PKAN.
Stichting Seppe was founded by a dedicated group of individuals, including Hanneke’s family, after their grandson, Seppe, was diagnosed with PKAN in April 2020. Seppe was born in 2016 and, like many families around the world, they were thrust into the difficult journey of understanding and managing this rare disease. PKAN is not well-known, even in Holland, which makes it challenging for families to access the resources and information they need. In response, Stichting Seppe was created to bridge this gap and help children with PKAN by providing essential tools and support to improve their quality of life.
It is with heavy hearts that we announce that Seppe passed away on September 18, 2024, at the age of 7, after a courageous battle with PKAN. Despite the increasing challenges he faced in recent weeks, Seppe remained strong and met his baby sister Sammie, who was born just days earlier on September 9. His bravery, love, and spirit touched everyone who knew him, and he will forever remain in our hearts.
One of the primary goals of Stichting Seppe is to raise funds for vital equipment and resources for children with PKAN or other NBIA-related disorders. By easing the daily challenges these children face, the foundation hopes to make life a little more comfortable and manageable. Their commitment to the PKAN community is inspiring, particularly because funding for such rare diseases is often hard to come by due to a lack of awareness. Stichting Seppe’s work not only brings hope to families but also helps build a global network of support for PKAN research and treatment.
Seppe himself participated in a two-year clinical trial in Holland, and while the trial has since ended, it offered hope to his family and others fighting PKAN. Stichting Seppe continues to monitor the latest developments in PKAN research, providing a crucial link between families and the scientific community, which is working tirelessly to find a cure. At the Loving Loic Foundation, we share a common mission with Stichting Seppe: to fund research and find a lifetime cure for PKAN. This donation will help us take another significant step toward that goal by supporting critical research initiatives and ensuring that families like Hanneke’s and mine have the resources they need to care for their loved ones.
On behalf of the Loving Loic Foundation, I want to thank Stichting Seppe and Hanneke van Maren for their generosity, compassion, and dedication. Together, we are building a future filled with hope, where no family has to navigate the challenges of PKAN alone.
In loving memory of Seppe, whose spirit will continue to inspire us all.
You can learn more at: https://www.stichtingseppe.nl/
With deep gratitude,
Sherine
Founder, Loving Loic Foundation
