Seb's Simple Wish List
Donation protected
My nephew Seb has spent his whole life defying the odds but has now been diagnosed with terminal cancer.
I hope to raise as much as possible, to allow Seb and his family to make as many memories as they can in the time they have.
Seb was born in 2004 and spent much of his young life in and out of hospital. He was diagnosed with Mulvihill-Smith syndrome. Mulvihill-Smith syndrome is an extremely rare and complex disorder with only 11 cases documented in scientific literature worldwide. It is clinically diagnosed based on the following characteristics: abnormally small head, multiple non-cancerous moles, short height, reoccurring infections due to an impaired immune system, impaired hearing, dental anomalies, intellectual disability and decreased fat in the face that causes “bird-like” facial features. Affected individuals appear more aged and can develop illnesses associated with older age such as tumours, and this is why Mulvihill-Smith syndrome has been categorized as a premature ageing disease. He also has type 1 diabetes.
In May 2022 they found a polyp in his stomach which they removed and tested, but it came back cancerous. Then in Oct 2022, they found another polyp in his stomach, which was also cancerous. In December they had a meeting at the Churchill and it was decided that the best option was to remove Seb’s stomach. On the day of the operation, they discovered that cancer had spread to his oesophagus and every layer of his stomach, so it was decided that surgery could not go ahead. They did discuss chemotherapy; but because of Seb’s underlying health issues, this was not an option, as this would make him very poorly and ruin his quality of life.
In spite of years of operations and being so poorly, Seb never complains, and he has the most infectious smile that melts your heart. He’s our inspirational hero.
Everyone that knows or who has met Seb adores him.
Seb’s mum Hayley, Hayley’s partner Keith, sister Kayleigh and brother Ashley are all devastated, as we all are. Their focus now is to make the most of their time together.
The aim of this GoFundMe page is to try and raise what we can, to help them complete as much of Seb's wishlist as possible.
This includes:
Going to the theatre
The Zoo
An aquarium
Legoland
Ride on a steam train
Going to watch Arsenal or Leeds
Having a holiday as a family or time away together.
It is all about making as many happy memories as possible with the time that Seb has left.
Please donate as little or as much as you can, every penny will help.
Love Collette and all of my family xx
Organizer
Collette Bennett
Organizer
England