Expert meeting on Morquio disease - very informative

Jerry and Dotty picked us up at 8.00 am using a 14 seater mini bus. We then headed to Wolverhampton to pick up another Pakistani family; a mother and two boys who are affected - Haide 15, and Ali 10. They are wheelchair bound; Ali can still walk a short distance, but Haide can only crawl at home. Haide has had cervical fusion last December 2007.
We reached Hilton Northampton close to 12N, registered for the conference and had our lunch. The meeting started at 1.30pm. Before that, we dropped Adnin and Aqilah at their volunteer, Emma Martin. The girls had 'Little Miss makeover' session whereby they were pampered with face painting, nail painting, nail stickers, individual make over which include hats, jewellery, hair extensions, crown etc. Adnin chose to be a butterfly and she got her wings too, while Aqilah chose to be a princess with her crown and so on. On Saturday, they went for bowling in the morning, and Mad science session in the afternoon. What a weekend for the kids and they really enjoyed themselves!

For us parents, we have series of talks from doctors, researchers, physiotherapy, surgeons and so on, as well as personal experiences of individuals/families who are affected by Morquio. The most interesting part were talks from researchers of the ERT. Currently there are two companies that are working on the ERT for morquio disease and they are at the stage of doing the clinical test for the drug. The clinical test would mean to test on human and the first phase will start in September, with a small number of children. There will be six international centers that will be involved and I really hope that Birmingham Children's Hospital will be one of them. And prayers for this Ramadhan would be for Adnin and Aqilah to be chosen for the clinical study, which means they get to test the ERT first. The criteria that they are looking for - children age 7 - 15 who are able to walk a short distance and able to understand instructions. Adnin and Aqilah have done the six minute walking test earlier on I certainly would not mind making frequent visits to the hospital to get them measured etc.

There were around 200 delegates for the conference. It really is painful to see the kids affected with morquio. Some of them are badly affected that they are wheelchairbound since the age of 10 or earlier. I met a Pakistani friend whose daughter have to be on wheelchair since the age of 6. Being in the UK, they are equipped with electric wheelchairs and they went on here and there like lightning! So fast and if you are late, they certainly can honk you...