Alfie Thorn

Holiday to Legoland

Alfie is a 7 year old little boy who suffers with a rare genetical condition called Loeys-Dietz syndrome (LDS) is a genetic disorder that affects the connective tissue in the body causing life threatening aneurysms Alfie's also has Arteriel tortuoisity this is twisting of the main arteries Alfie has Aortic aneurysm dissection ,Posterior lenticonus means Alfie only has one good eye with sight Hyper-mobility means Alfie joints aches and can only walk a little while till his legs ache and causes pain ,Ligament laxity pectus  excavatum this is a deformity that causes the breast bone to grow inward Causing Mild obstructive sleep apnea also due to cleft uveyla also part of loyes dietz syndrome.

 

Alfie's main risk of loyes dietz syndrome is it's a life threatening condition with no cure and is extremely rare there still learning so much about it Alfie has many hospital appointments to keep a close eye on his heart and is on a adult medication called losarton which is used for adult blood pressure but is used on Alfie to help slow the growth of the anarysm down this causes him to feel very weak and tired at times but it's the only clinical drug they find to help be slowly the growth of the dissection. Alfie's illness is a life threatening condition and is life long.

 

Alfie's wish was to have a family holiday at Legoland and Ask Albie was only to pleased to grant it. 

 

His wish was granted july 2016

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