Hello everyone,

My youngest grandsom was diagnosed with MPS 1 - Hurler Syndrome, a rare genetic disease that is incurable and drastically shortens lifespan. Without treatment, children may only live until the ages of 5 to 10, while those who receive treatment can expect to live between 20 to 30 years.

The one available treatment that can help with his development and slow the disease's progression is a Stem Cell Transplant. Last September, he matched with a remarkable donor from Germany. After thorough evaluations, he underwent his Stem Cell Transplant on the 9th of October, 2024. Despite facing some challenges along the way, he has always managed to keep a smile on his face.

He also required essential treatment for Graft versus Host Disease but overcame it with incredible strength. As a family, we are profoundly grateful for the success of this transplant and for having such an amazing donor supported by Anthony Nolan.

Now, at 141 days post-transplant, he is thriving! However, we know there is still a long journey ahead. It’s inspiring to know there are extraordinary individuals on the donor list willing to help those in need during their most vulnerable times.

To raise awareness about how vital Stem Cell Transplants are and how many lives depend on this support, my daughter Shayla & my son Tristan and I have decided to take action. We are excited to announce that we will be participating in "Skydiving for Anthony Nolan Charity" on May 10th, 2025. Our goal is to raise £400 each £800 in total for this incredible organization.

We kindly ask for your support in this important cause. Even sharing this page would mean the world to us! Thank you all so much for your kindness and generosity 🙏🏻