On the 26th of July 2024 our beautiful baby boy Marselle Robin Haskell was born at St Richard’s Hospital. Sadly, his arrival was more complex than we 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. Our amazing Marselle has faced so many obstacles already in his short life but at just 5lbs7 what he lacks in size he more than makes 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 mummy and daddy by his side. However, on Friday 2nd July, after just one day at home, our lives were turned upside down once again and our 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. The prognosis is harsh, his life expectancy is short at just 6 to 24 months and his care needs are complex. He requires around the clock attention and incredibly careful handling to avoid any chance of friction of his skin, making almost all of the most simple baby tasks, a 2 person job. As we adjust to our new normal, we know that our time with Marselle is short - therefore he is already making sure we have great memories of him to cherish forever.

So...what can we tell you about Marselle after just over a week at home.

1. He snores like a Haskell boy and has a profound love for milk. A true Haskell.

2. He is expressive and has no issue sharing his opinion through his little facial expressions. (Gets that from both mum and dad).

3. He has so much energy already. You can tell if given the chance he’d be taming a barbell and flying through his burpees in no time. It breaks our heart knowing he won’t get the chance to do that.

4. He expects only the best. Silk or satin is his preferred clothing fabric. Not only does it help to protect his skin, but let’s face it, it looks so dashing.

5. He is ridiculously chilled. If he isn’t sleeping, feeding, or snoring, he’s chilling, looking around and staring back inquisitively at his mum and dad.

6. He is so brave. Part of his day-to-day routine is the lancing of his blisters and dressing of his wounds but he faces into it like an absolute champ.

7. He has a great hairline. Luckily, he got mum’s and none of that from dad.

Marselle is a beautiful baby boy but his time with us on this earth will be harrowingly short, full of obstacles but overwhelmingly abundant with love from his mummy, his daddy and his wider family who already think the world of him.

We know lots of our amazing family and friends would love to buy him lovely baby gifts but sadly most will be unsuitable for him given his condition. However if you would like to help Marselle by contributing towards his ongoing care and support for however long it is needed, this would be greatly appreciated.

Any remaining amount beyond his care costs will be donated to one of the few charities that are dedicated to finding a cure for this awful condition, with the aim of one day putting an end to EB and the pain and suffering that it causes.