When Aleena turned three, her parents noticed her development was not progressing as expected and she was more tired than other kids her age, so they decided to take her to the Stollery. Aleena had multiple tests done and was diagnosed with an extremely rare, progressive disease called mucopolysaccharidosis type 6 (MPS VI). Her body lacks an enzyme to break down cellular waste deposits, so they accumulate on her organs, tissues and bones.
There is currently no cure, however Aleena receives a five-hour weekly enzyme replacement therapy to slow the progression of the disease. In addition to her rare diagnosis, Aleena sees countless specialists to monitor her heart, lungs, eyes and brain. Over the years, Aleena has also required additional surgeries and has been treated for things such as hydrocephalus, carpal tunnel syndrome and other bone and joint procedures. Aleena’s parents are grateful to have the support of the experts at the Stollery just a short drive away.