McKay Stiles

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

Sunday, December 14, 2008 10:49 PM CST

Merry Christmas all,

In lieu of Christmas cards I shall use this web update to spread our Richards/Stiles Christmas cheer. I’d like to think it is more environmentally friendly but really is just a lack of organization.

We have spent the last two weekends in Banff soaking up some winter fun as we are off to Hawaii (Maui) for Christmas and New Years’ with my mom, sister, brother and all the spouses and kids. We’ve had lots of tobogganing, snowy walks, snow angels and warm cozy fires. We even made gingerbread men (see photos) and decorated our Christmas tree. Mac loves tobogganing – the faster the better and preferably head first, without parents. He also tried out skis for the first time. We managed a couple of slides down the backyard hill till he got bored but it was a first step - or is that shush? It did show us the value of a good ski instructor however – preferably one with a stronger back then I.

Mac’s arm is much better and the cast came off after the requisite four weeks. He was supposed to wear a splint for more risky activity but once that cast was off there was no way he was going to let anything else go on. He has also had a number of appointments to finish off his tenure with the Perinatal ‘Complex Therapies’ program that was initiated when he received his bone marrow. They test hearing, sight, general health and psychology every year. So far all looks stable – including his hearing (seems to still have lost some of the higher frequencies) and sight (minor corneal clouding, farsighted with astigmatism) although the testing is only so reliable as the patient does not participate quite the way he should!

We are also still waiting on a talk with his Orthopod to see how he is developing – his cervical spine and hips for example. That will be some time in the New Year.

For now Mac is very focused on Spiderman and SuperWhy, playing with friends, climbing over everything, swim lessons, his upcoming plane ride with his cousins and Christmas trees. Ours is apparently not big enough to be a real tree. He laughs often, loves to kiss and hug and delights us every day.

As for our Christmas wishes – that you are all safe and happy. That you find joy often. And that you can experience, as we have, the great good fortune of having friends, family and perfect strangers give you gifts that do not cost a thing but mean so much. Gifts of love, laughter, bone marrow, understanding, challenge and friendship.

Patty, Patrick and Mac

(New photos posted)

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Hospital Information:

Alberta Children's Hospital

Calgary, Alberta

Links: