I have been neglecting this blog and feel like updating it following the appointment that we had with the pediatric institute yesterday.
Glad to know that the hospital has been considered as a center for the third clinical trial of the enzyme replacement therapy for MPS IVA. The second phase has shown a success and they are now going for the third phase and this will include 150 hospitals worldwide.
We are ‘just in time’ – including the kids, there are only 5 kids affected with Morquio Syndrome at the hospital. I bet there are many more out there, it’s just that they don’t go to the hospital to get it diagnosed.
As usual, the kids have to go through all the check ups again like they had in the UK. They had their echo done yesterday as well. The results showed that there are leakages at the left chambers, in a layman term, the door did not close perfectly. For sure, they are not fit for diving :-)
The kids had their dental check up yesterday too including x-rays of their teeth. This is a new case for the dental department and true enough they attracted lots of attention at the department. Adnin and Aqilah were like celebrities, they even had their photos taken.
We then fixed appointments at other departments – ortho, MRI, Rehab and Opthalmology. It will be good for the kids but what I dread about it is that the hospital is located at the center of town and for sure we have to struggle with the traffic jam and parking…