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Welcome to our child's web page. It has been
provided to keep everyone updated about our
lovely little boy.

Will has MPS 2 (aka Hunter's Syndrome). Hunter syndrome, or mucopolysaccharidosis II (MPS II), is a serious genetic disorder that primarily affects males. It interferes with the body's ability to break down and recycle specific mucopolysaccharides (mew-ko-pol-ee-sak-ah- rides), also known as glycosaminoglycans (gli-ko-sah-mee-no-gli-cans) or GAG.

In Hunter syndrome, GAG build up in cells throughout the body due to a deficiency or absence of the enzyme iduronate-2-sulfatase (I2S).This buildup interferes with the way certain cells and organs in the body function and leads to a number of serious symptoms. Physical manifestations for some people with Hunter syndrome include distinct facial features, a large head, and an enlarged abdomen. People with Hunter syndrome may also experience hearing loss, thickening of the heart valves leading to a decline in cardiac function, obstructive airway disease, sleep apnea, and enlargement of the liver and spleen. In some cases of Hunter syndrome, central nervous system involvement leads to developmental delays and nervous system problems. Not all people with Hunter syndrome are affected by the disease in exactly the same way, and the rate of symptom progression varies widely. However, Hunter syndrome is always severe, progressive, and life-limiting.

We Hope that this page will help everyone
understand the challenges he faces.










Journal

Saturday, October 4, 2008 12:04 AM CDT

Hi
we've had a very exciting week!
We were filmed for Jeans4genes day and this was shown on Friday 3rd October! see link below (you have to click on Will's pic and wait for advert to play!).This Charity supports and cares for children with genetic illnesses by funding charities like our MPS society for either care for families or research ! They encourage workplaces to let people wear jeans on this day and contribute to the charity!We always support the day at my school and it co-insided with our grand opening of the centre so I hope we raised A good amount for them! http://www.itvlocal.com/central/news/?player=CEN_News_15&void=242058

Dave and Will were also filmed for BBC news this week but this was more around early identification of MPS disease inorder to start treatments as soon as possible! I will post a link when I can!
Well you can see we've been busy! just waiting for 17th October when will is having another round of tests and examinations including MRI under sedation so please wish him luck love Laura

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E-mail Author: labro4will@yahoo.co.uk

 
 

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Note: The foregoing information was authored by the patient, parent or guardian, or other parties who are solely responsible for the content. Such announcements or their content are not necessarily endorsed by CaringBridge, Inc. or any sponsoring agent.  This information does not confirm that anyone is or was actually a patient at any facility.
 
 
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