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UPDATE 8/11/20
We just want to say thank you to every single one of you that has donated or shared Joshuas page.
Last week we had the devastating news that the chance of open heart surgery is very slim as they are worried about the risks of him coming through the operation. He’s extremely high risk and he’s extremely poorly. He is in heart failure and he has severe heart and lung conditions.
We are raising money for a second opinion as we believe if anyone can save Joshua then it’s Professor Gatzoulis from the Royal Brompton. We believe that to get a faster result we need to go private,we will do whatever it takes to give Joshua the best care possible. If Professor Gatzoulis says that nothing can be done then we will use what funds are left to hopefully complete Joshuas bucket list.
It includes
A trip to the Deep in hull.
A trip to London to go to Harry Potter studios and the London dungeons.
A trip to Disneyland to go on his favourite ride ‘The haunted mansion’
To go to a WWE match and meet the wrestlers.
He’d love to chat to his favourite band Slipknot’
To have a shopping trip to buy his family gifts for Xmas 😞 ( he loves his family so much)
To make memories,movie nights,crafts with the family that he’s made for us and hand casts.
I’m sure he has many more to be honest but he doesn’t know how bad things are,we’ve not told him as we need him to have hope 💙
We’d also like to make his 21st birthday one to remember,if anyone would like to send him a card then please inbox for out address.
Thank you once again for all your donations,shares and well wishes
UPDATE: We have had the devastating news after Joshua’s assessments that his condition has deteriorated and is worse than specialist thought, his condition is too severe for surgery, the only option now is to manage his symptoms or the vague possibilty of a heart and lung transplant, the specialist has said this option is unlikely.
The money raised will be going towards Joshua’s 21st birthday at the end of November, completing what we can manage on his bucket list (which is difficult because of covid), for any equipment he may need to make him more comfortable and to help with the costs associated with hospital visits and care.
Myself and Joshua’s parents want to thank you for all your donations, this money may mean that Joshua’s life is more comfortable and hopefully enable him to make some lovely memories, which I know means a lot to all of us. Joshua is an amazing young man, it is heartbreaking seeing him struggle and for such a normally postive young man being scared of what’s ahead. It is some comfort to us all to know how many people care about him and how many lives and hearts Joshua has touched. Thank you for your kind messages.
My amazing godson Joshua is 20 years old. Joshua has a condition called Williams Syndrome. Throughout his life Joshua has struggled with heart problems as well as other problems that come hand in hand with having Williams Syndrome. Joshua’s heart problems have been getting progressively worse and last year Joshua’s health took a turn for the worse and he ended up hospitalised for a considerable time with pneumonia and heart and lung problems. Since then Joshua has struggled to recover, he can hardly walk anywhere, struggles to breathe and is basically housebound as hes vulnerable. The family have only just yesterday found out that Joshua has a condition called ‘mid aorta syndrome’ apparently it’s very rare and even if he pulls through surgery his life expectancy if his MAS is left untreated is under 40yrs old. Normal aortas are 2.5 inches wide, Joshua’s is 6mm wide. Joshua has also been diagnosed with the following conditions:
-Severe mitral regurgitation
-Pulmonary arterial hypertension
-middle aortic syndrome
-aortic stenosis
At the moment he is undergoing lots of tests to see if he can undergo surgery that may help, there is a lot of doubt if this will even be possible due to him being so poorly.Joshua is one of the most amazing young people I have ever known, he is so loving and caring and never has a bad thing to say about anyone or anything. He has such a big heart. I want to raise as much money as possible for him so that his parents don’t have to worry about the extra costs of extended hospital stays (Joshua doesn’t recieve his treatment and testing locally so they may have to pay for hotels, meals etc), any equiptment that may help make Joshua more comfortable and so that if there is anything he needs or wants that might brighten his life up a bit.There may also be a chance Joshua might need to see a soecialist in the US that may be able to help him in the future, this will be very expensive and mean that the family will badically have to sell everything they own (house, cars, etc) so any money raised will go towards paying for this treatment too if this becomes the case. Joshua’s parents have two children with significant special needs which makes it difficult for them to work and ensure they get what they need, so every penny really does help and will be so much appreciated. Thank you in advance!