Sian's page

Sian Thorpe Gibbard is raising money for The Society For Mucopolysaccharide Diseases (The MPS Society)

Story

Updated on Oct 13th 2012 at 11:33 AM from the JustGiving API

Omgeeeee cant believe its 2mo...exciiitiiiinn :D xxx

Updated on Oct 11th 2012 at 6:11 PM from the JustGiving API

2days 2 go!!!!xx

Updated on Oct 7th 2012 at 4:33 PM from the JustGiving API

Thankyou sooo much 4 ur sponsors, it means a lot :) a week 2day& itl all be over!!xxx

Updated on Sep 26th 2012 at 1:32 PM from the JustGiving API

Thank u again guys 4 ur support :) xx

Updated on Sep 21st 2012 at 8:15 PM from the JustGiving API

Thank you.xx

Updated on Sep 19th 2012 at 7:53 PM from the JustGiving API

Trainin 4 a half marathon is soooo hard but worth it 4 all the money bein raised for this important charity!xx

Updated on Sep 17th 2012 at 7:48 PM from the JustGiving API

Thanx 4 all sponsors so far, less than 4 wks till marathon so plz take a min 2 read my page :) xx

Updated on Sep 17th 2012 at 7:44 PM from the JustGiving API

Less than 4 wks till the marathon! Plz take a min 2 read my page :) xx

Thanks for taking the time to visit my JustGiving page. I am taking part in the Cardiff half marathon along with some of my best friends. As most of my friends & family know my precious angel Sonny was born with hurler syndrome (MPS).When Sonny was born he had breathing difficulties and spent 10 days in an incubator, he continued to have health issues until at 4 months old he had various tests and was diagnosed with Hurler syndrome (MPS1), worse still he had the most severe form of it.

Hurler syndrome is a rare genetic condititon that results in the body attacking its own internal organs, bone and spinal defects and mental retardation. This happens due to a vital enzyme missing that would normally breakdown the substance that surrounds cells, as this enzyme is missing the jelly like substance then collects around all the organs and bones resulting in damage and organ failure.

There is no cure for this illness, however bone marrow transplants do slow down the progression of the symptoms and without this treatment life expectancy is between 5-10.

Sonny had his first transplant in 2008 which involved weeks of intense chemotherapy, unfortunately his body rejected this bone marrow and he deteriorated which resulted him having respiritory failure and on life support for 3 weeks. The consultants decided the only way to save his life would be to give him back his own bonemarrow, however this meant that Sonny was no better off and still faced with the original prognosis.

Sonny had his second bonemarrow transplant in 2010, he responded well to treatment and after 8 weeks was allowed home, subject to weekly visits to the hospital. We still have to go for checkups and different procedures at the hospital and always will. Sonnys hearing and sight has already been affected and he wears hearing aids and glasses. He also has severe curvature of the spine which he is having surgery on in the near future and his lungs are severely scarred and he only has 60% capacity of them meaning he gets out of breath very easily. Through all of this Sonny has remained determined and always smiling, he has a funny personality and is my pride and joy. By raising money for the MPS Society im hoping and praying that there will be a cure for my son and other children like him. Thankyou.xx

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