Rory’s recovery: a rare diagnosis of Marburg MS

***UPDATE***

I can’t thank you all enough from the bottom

of my heart. Everyone has been so generous. Anything we raise over our target (that we’ve smashed - thank you thank you thank you) will go towards helping Victoria cover their family’s living expenses. Rory’s amazing employer has supported Rory & Victoria but with no return to work date, that support is coming to an end soon. Giving Rory, Victoria, Aine & Edith the ability to focus on recovering from this life changing event is the best gift they can receive so thank you.

Hello everyone,

My name is Shauna, and I am Rory's sister. I am reaching out to you today with a heartfelt plea for support. Our lives took an unexpected turn on Mother's Day this year when Rory, my brother, suffered a severe cranial seizure and was rushed to the hospital.

Let me tell you about Rory's journey. Just days before this devastating event, Rory expressed to his wife Victoria how happy he was with their life in Portugal, where they reside with their twin girls, Aine and Edith. But on that fateful Sunday morning, everything changed. Rory experienced another seizure on the way to the hospital, and the situation quickly escalated.

Rory's brain was under immense pressure, and the doctors had to perform emergency surgery. They were initially unsure of the cause, and we were told to prepare for the worst. The uncertainty and fear were unbearable. Rory's skull had to be removed to alleviate the pressure, and for the following three weeks, the doctors conducted extensive tests to determine the cause of the damage.

Eventually, the heartbreaking diagnosis came: Rory had Marburg MS, an extremely rare form of multiple sclerosis. Only eleven clinical cases have been reported worldwide, and it is a condition most neurosurgeons may never encounter in their careers. Information about Marburg MS is scarce because the majority of those affected do not survive the initial catastrophic event.

Miraculously, Rory did survive.

After spending a month in intensive care, Rory was transferred to the neurology ward for further treatment. Over the next two and a half months, his condition gradually improved. With incredible strength, he battled through the challenges. From a swollen brain and limited movement on his right side to relying on a tracheotomy and feeding tube, Rory fought every step of the way. On June 19th, a brain shunt was inserted to alleviate excess fluid, followed by skull replacement surgery a week later. Finally, on July 5th, Rory was discharged from Santa Maria hospital and moved to a specialist neurological rehab facility in Torres Vedras.

Now, Rory faces an intensive rehabilitation phase. Physiotherapy, nutritional support, and speech therapy will be crucial in his journey towards recovery. We have chosen CNS for its outstanding facilities and proven track record in rehabilitating patients with brain injuries.

To ensure Rory receives the best possible care and continues his treatment at CNS, I am raising funds to cover his expenses. The family has already funded the first three months, amounting to £21,000. To contribute, I have committed myself to run the challenging Seven Hills of Edinburgh, a grueling 14-mile course involving various terrains and obstacles.

I kindly ask for your support. Any contribution you can make or even sharing this post would mean the world to us. Let's rally together to give Rory the best chance at reclaiming his life.

If you have ever faced a diagnosis of Marburg MS, please know that you are not alone. We stand united, providing each other strength and support in our shared journey.

Thank you from the bottom of our hearts.