Sean is being bold and going bald for Arthur!!

Let me cut to the chase – I am going to shave my hair and much loved and well-groomed beard completely off and Arthur is the reason why, but only you can make this happen.

While I knew Mel and her family, it wasn’t until late February that I really appreciated just how poorly her son Arthur was and the huge amount of care he needed. We had a Zoom wine tasting evening with a few friends and afterwards when we were talking, Mel mentioned that Marcelo was on duty that night. I asked why and as Mel explained why, it was only then that I fully realised the extent of Arthur’s conditions. As the conversation went on, I asked what would be his dream holiday? Mel replied “To go to Disney’s Animal Kingdom in Florida to see the animals, as it’s his favourite TV programme.” Arthur’s situation really got to me that night so I decided I needed to do something to raise about £10,000 to send him (and his family Mel, Marcelo, and sisters, Amelia and Evangeline) on his dream holiday.

So what could I do? It was very easy…..Those who know or have met me, will think of my well-groomed hipster cool beard, which I have not been without since 2006, and sharp hair. And that was it – shave my beloved beard and hair off and go completely bald if I can raise £10,000 or more, by Saturday 8 May. It’s really simple, if you want to see me bald then dig deep and make a donation – how ever big or small. I really want to send Arthur to the Animal Kingdom in Florida and make a massive memory for him and his family.

Thank you for reading and for any contribution you want to make - a “bald” future for me lies ahead at least for a while anyway.

A little bit about Arthur and what he and his family go through every day

Arthur was born with Congenital Bilateral Perisylvian Polymicrogyria, a rare neurological disorder and a Bilateral Vocal Cord Palsy. Together, these gave him a life threatening condition, where he can choke regularly, even on his own saliva, needing round the clock supervision, suctioning and multiple ambulance/hospital attendances. He cannot talk or eat or drink, and receives all of his nutrition through a gastrostomy button. This type of Cerebral Palsy also affects all 4 limbs and, although he is able to walk, he suffers multiple falls a day, and has a motor processing disorder. He has weakness, spasticity in his core, limbs and hands and needs 24 hours care to provide all his basic care needs. His prognosis from birth was considered that he was unlikely to live to adulthood. Unsurprisingly, he also has a global developmental delay.

Despite this, Arthur is a beautiful, happy boy - full of joy and positivity and friendliness. He has always lived every day to the full, enjoying in particular animals and football and spending time with his family. Although his condition is lifelong, following many operations and interventions, his family grew accustomed to providing for his care needs and he began to communicate using simple makaton signs and started to attend school and an inclusive football club. Life was still worrying at times and exhausting but felt more positive than initially expected. Arthur’s family were then devastated around a year ago when he developed an epileptic encephalopathy which is reasonably drug resistant, which means he can now sometimes have hundreds of seizures a day. His prognosis is now extremely poor both in terms of cognitive and physical deterioration, as well as life expectancy. He still has good weeks and bad weeks at this stage but has had multiple hospital/hospice stays throughout this year, where at times we thought we might lose him. When he is severely ill, as a family, it is impossible to enjoy anything. No one knows how much time they have left with Arthur, and they have been advised to make some special memories while he is well enough to enjoy himself.