Family aims to help terminally-ill son complete bucket list
Devoted relatives of a terminally-ill 21-year-old Lincolnshire man say they are doing all they can to raise funds to complete his bucket list, after doctors said he only had two years at the most to live. Earlier this month, the family, anticipating news for an operation on Joshua’s valve, were told the devastating news over email that Stanford Hospital in California has withdrawn their offer to operate on him, due to health risks surrounding how small his aorta is. Joshua Bilton, 21, from Ermine East in Lincoln, was born with Williams Syndrome and has also been diagnosed with stage three heart and lung failure.
After suffering from pneumonia and sepsis in 2019, Joshua was diagnosed with heart failure, a severely leaking mitral valve, severe PAH (pulmonary arterial hypertension) and MAS (middle aortic syndrome) in 2019. Doctors have since told the family that Joshua has two years to live at best and to make as many memories as possible and enjoy the time they have together. Before Joshua became poorly he was very active and completed his Duke of Edinburgh in bronze and silver.
He now gets breathless quickly and has to be in a wheelchair when he’s out and about. His family said he gets cold easily due to poor circulation, and has to sleep propped up due to the fluid in his lungs.
(Image: Heather Bilton)
Joshua’s family has certainly taken up the challenge with several events organised to fundraise for Joshua’s bucket list. In October, they have organised a skydive which will be held at Hibaldistow Airfield North Lincolnshire, a sponsored 10k walk followed by a big raffle night, and even a truck pull event.
One of the main things on Joshua’s bucket list is to go on holiday to Disney. Joshua’s mum, 42 year old Heather Bilton said: “We are shifting the focus to make a positive and taking Joshua to lovely places and enjoying nice holidays. “Disney is what we call our happy place.
We’re free there. There’s no hassle, no illnesses, no worry. You’re just there for an amazing time.”
On Monday night, Joshua met WWE wrestlers Rey Mysterio and Dominik Mysterio in London.
(Image: Heather Bilton)
Ms Bilton also said that lockdowns throughout the pandemic were hard for the family as they were shielding and unable to leave the house and had to have Joshua’s medication brought to their car. Joshua also missed out on going to day centres to socialise with other people. Ms Bilton said: “One thing about Williams Syndrome is they are so sociable.
“He would open the window just to see who was walking past and shout hello and try to strike up a conversation because he was so desperate for interaction.” Ms Bilton also explained that it can be expensive to go on holiday because they are a big family. The family consists of Joshua’s dad David, 43, and his younger sister Aaliyah, 18, who has down syndrome, along with Joshua’s siblings Scarlett, 13, and Max, who is 11.
Joshua’s dad is his main carer and Ms Bilton works with severely disabled adults. Ms Bilton said Joshua is happy all the time despite the challenges he faces. She said: “He just soldiers on through everything.
All the hospital appointments, all the blood tests, all the anaesthetic he’s had to have he just takes it because he wants to be better. “He always has a smile on his face and would never see the bad in anyone. “He does worry about his health but he really tries not to show it.
“Joshua doesn’t know how poorly he is and we wouldn’t tell him because I wouldn’t want to put him through the worry and upset, I just want him to enjoy every day and he does.” Originally Joshua’s family were fundraising to get life-saving treatment for him in America, but when they found out he was too poorly to have the treatment done they stopped fundraising and were unsure of what to do. Ms Bilton explained that fundraising for Joshua’s bucket list really helps to turn the devastating situation into something positive.
“It is devastating when you actually sit down and think about it but trying to raise awareness through all the fundraising events helps shift the focus and turn it into something more positive.” Joshua’s family continue to work towards raising money for his bucket list so that he can experience some great memories and the whole family can have quality time together. Other activities on Joshua’s bucket list are to meet Slipknot and Ryan Reynolds, and to go back to the Harry Potter studios.
Ms Bilton said: “The fact that people are doing these amazing events just for Joshua is overwhelming. “It’s been an absolute rollercoaster. He’s always had a heart condition but before September 2019 he was rarely poorly at all and now we are taking every day as it comes.”
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