Marselle Haskell

On the 26th of July 2024 my beautiful nephew Marselle Robin Haskell was born at St Richards’s Hospital. Sadly, his arrival was more complex than anyone could have ever imagined. He was born with an open wound on his leg and a number of small blisters across his body causing immediate concern amongst the medical staff and, an immediate need for further testing for a rare, incurable skin condition called Epidermolysis Bullosa (EB). The condition is also known as butterfly skin due to the skin being as delicate as a butterfly’s wing where the tiniest amount of friction will cause him to come out in blisters and sores. Marselle faced so many obstacles in his short life but at just 5lbs7 what he lacked in size he more than made up for with his inquisitive, expressive, and beautiful personality.

After 6 days in Neonatal care, Marselle was finally able to come home to Russell Road to start his new life in the Witterings with his mummy and daddy by his side. However, on Friday 2nd July, after just one day at home, their lives were turned upside down once again and their worst fears were confirmed by Great Ormand Street Children’s Hospital. Marselle was formally diagnosed with the most rare, aggressive, and unforgiving form of Epidermolysis Bullosa know as Severe Junctional EB. Sadly, just 15 days after arriving into the world, Marselle succumbed to the illness and passed away on the 10th August.

Marselle was a beautiful baby boy and, although his time with us on this earth was harrowingly short and full of obstacles, he was overwhelmingly loved from his mummy, his daddy and his wider family who thought the world of him.

I will be competing in the London to Brighton bike ride on 15th September in memory of Marselle and will be fundraising for the charity ‘Debra’ who have been supporting over 4000 members since 1978, including people living with EB, relatives, partners or carers of those with EB, healthcare professionals and researchers who work to find effective treatments and, ultimately, a cure for EB.

If you would like to help those affected by EB, any contributions towards this would be greatly appreciated.