So I've told you a bit about what MPS is and some symptoms that Corey has, today I'm going to tell you about some of the treatment he has received.
MPS1 means Corey was born missing an enzyme, without this enzyme (alpha l iduronidase) his body stores GAGs (glycosaminoglycans) which is what causes the symptoms of MPS1 - Hurlers.
Some very clever peeps have developed a synthetic enzyme to replace the one that Corey was missing, called Laronidase.
Within 2 weeks of Corey's diagnosis we were up at Bristol Children's Hospital receiving a 6 hour infusion of this drug. And every week thereafter.
This involved arriving in Bristol by 9am, Corey getting cannulated (another symptom of MPS is thick skin and bad veins) so this was always traumatic, waiting for infusion to start and finish and occupying an 11 month old confined to a bed!
Between May 19th and July 19th we were in Bristol every Monday for this expensive wonder drug, which made his breathing easier, reduced the size of his liver and spleen and made his joints less stiff.
In these 2 months he also had an MRI, an ECG (ultrasound of his heart), a Hickman line placed, a bone marrow aspirate, various X-rays and a lumber puncture. We met with umpteen doctors and went through a period of learning about his next stage of treatment - Bone Marrow Transplant.
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