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 also has Arterial tortuoisity. This is a twisting of the main arteries and Alfie also has Aortic Aneurysm Dissection. Posterior Lenticonus means Alfie only has one good eye with his sight.   Hyper-mobility means Alfie's joints ache and he can only walk a little while because his legs ache and this causes him pain.   He also has Ligament Laxity Pectus  Excavatum which is a deformity that causes the breast bone to grow inward causing Mild Obstructive Sleep Apnea; also due to Cleft Uveyla as a condition of Loeys-Dietz Syndrome.

 

Alfie's main risk of Loeys Dietz Syndrome is that it is a life threatening condition with no cure and is extremely rare and so much more to be learned about it.   Alfie has many hospital appointments to keep a close eye on his heart and he is on adult medication called losarton, which is used for adult blood pressure, but is used on Alfie to help slow the growth of the aneurysm down which causes him to feel very weak and tired at times, but it is the only clinical drug found to help be slow 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 too pleased to grant it. 

 

His wish was granted July 2016.

© Ask Albie . Ask Albie is a registered charity in England & Wales, No. 1165041