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Welcome to Mac’s Web Page. It has been created to update about Mac and his progress with Hurler’s Syndrome (MPS I).
McKay Kenneth Richards Stiles (Mac) was born on March 21, 2004 to parents Patrick Stiles and Patty Richards. He was diagnosed with Hurler’s in early December 2004. Mac’s cells lack an essential enzyme needed to break up mucoploysaccharides (sugar molecules). Without the enzyme, these sugar molecules build up in his body leading to damage to the brain, heart, liver, spleen and bones. This build up will eventually cause death.
While there is no cure as of yet, there is treatment. Mac had a bone marrow transplant (BMT) at the Alberta Children’s Hospital on May 11th and 12th, 2005. He also continued to receive weekly enzyme replacement therapy (ERT). The BMT was to help his body to produce the missing enzyme itself, thereby stopping the progression of the disease and possibly reversing some of the damage.
ERT stops the progressive accumulation of GAG (glycosaminoglycans) and may help control the disorder, improve lung function, functional capacity and endurance (e.g. walking ability) and reduce the size of the liver that was enlarged by the disorder.
While Mac successfully engrafted after the May BMT, two viral infections and their complications (post-transplant lymphoma) damaged the graft. Mac therefore had a second transplant in February 2006.
For more information on Hurler’s and MPS please visit www.mpssociety.ca/main.php. Also please consider registering to be a bone marrow donor. You can save a life like Mac’s. Visit Canadian Blood Services at www.bloodservices.ca for more information. Thanks for visiting.
Journal
Thursday, March 19, 2009 2:48 PM CDT Colin Farrell, the Irish actor and father to a disabled young boy, when questioned on the concept of normal, says his son is happier than so many people in the world. "I look around and I see people who move perfectly, who walk with grace, who speak with great diction and clarity and a great use of the English language and we're all miserable f---ers – including me, at times. And then I see this fella who doesn't move the way what's perceived to be 'normal' is, and he's as happy as can be."
So how's Mac? Happy.
Our son is almost five, and so very engaged and interested. And, his latest psychological assessment shows him cruising towards normal with a healthy dose of uniqueness thrown in.
He was assessed using a number of tests that showed his overall fluid reasoning (fluid reasoning is the ability to think logically and apply old knowledge to new situations) is quite good as is his fundamental visualization (good attention to visual detail and visual discrimination). He does however still have significant motor coordination, behavioural, adaptive functioning (e.g. dressing himself) and attention span difficulties. This assessment combined with his year-end review at Providence and a recent observation by his potential teachers at the Rideau Park School kindergarten will hopefully help us decide where to place Mac in the fall for kindergarten as well as design the additional supports he needs to become all he wants to be.
We've had a significant breakthrough on an issue of particular importance to me - toilet training. Mac is now toilet trained through the day. The odd accident but in underwear all the time - just a pull up at night and that is most often dry in the morning. He even goes to the bathroom, without prompting, by himself first thing upon waking. Aim, however, is an issue.
He's reading some words, can count over 20, is an able and skilled manipulator, and continues to be the cutest little boy I have ever met.
And he's five on Saturday, March 21. How far we have all come...
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