CaringBridge.org - willbrodie

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

Friday, May 8, 2009 2:19 PM CDT
Will did so well yesterday ! he was in theatre over 2 hours but everything went really well! His hand had one nerve with bad damage and the tendons underneath were incased in a concrete like substance! His port just needed retethering at this time! It was great to get both things done under one anesthetic and all the docs and staff were lovely as usual! Also The operation was filmed so Will is famous again!! Dave was interviewed with the Docs the day before so we await the DVD -I think its for teaching purposes/research!
Will was on TV again fleetingly this week as A boy with Maroteaux lamy was having his first ERT at our Hospital and they reviewed other children they had follwed it was strange to see him looking so young even though it was less than a year ago!
Also Will's feet have grown a size! I am pleased as his feet have not grown in at least 2 years!! ERT? who knows!
Well thats all the GOOD news for now!

Love Laura x

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Hospital Information:
Patient Room: At Home
Birmingham Childrens Hospital

Links:

http://www.mpsforum.com/
http://www.lsdsonline.com/
http://www.justgiving.com/avgoustitrek

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

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