Transport provided...

I got back from Montreal and glad to know that somebody will pick us up for Northampton. We just have to be ready at 8.00am in front of our house. How nice...

I'm really looking forward to the conference. Hopefully they are ready to release the ERT...

Extra ordinary people - on Five

We watched extraordinary people last night on Five and this time the story was on little people. It was a good documentary; showing the little people community mostly affected by genetic disorder. Although they are little, they really have a good life. Some even got married and have normal kid.

The world record of the smallest man on earth was a man from Mongolia, 19 year old Bao. He is only 2 feet 5 inches tall. Adnin and Aqilah are much taller than him - currently at 2 feet 11 (Adnin) and 2 feet 9 (Aqilah). They were kind of sad to watch the documentary as I presume they were thinking that their lives would be like the little people shown on the documentary. I really hope that the ERT will materialized and they can go as high as 4 feet...

The kids are down with fever...

It was a good decision to postpone the appointment as Adnin is down with fever today. Aqilah had it yesterday, vomitted a few times and was feeling uneasy last night. When she gets better, Adnin is taking her turn :-) It has nothing to do with Morquio; I guess they got carried away and were really over excited during our family day last Sunday. Certainly, the body needs rest. At the point of writing, Adnin is infront of the computer already, feeling better and managed to YM me.

Another hearing test?

Adnin received an appointment at the ENT tomorrow, Aug 5, 2008 @ 9.30am. Too short a notice; I called them up this morning asking whether it's for fixing the hearing aid. Opps, not quite, another hearing test it will be...maybe thorough one.

It's summer holidays and we certainly cannot get a cheaper rate for the train tickets. The best that I could get with the family railcard (discount card) was around £19. In the end, I emailed them to reschedule or better still, have it done here in Nottingham. It's an 'inflation' for me at this moment as my allowance for the next three month is nowhere to be seen :-) Therefore, where ever I can save, I should save...

Is your child continent?

I was filling up the children's information sheets for the Morquio conference as they need information about the children for them to be able handle them for their social programme. There was a question as saying, 'Is your child continent? Yes/No.' The 'continent' that I know is the 'landmass' ie European continent, Asian continent as so on. I looked up the dictionary.com and came across another meaning of continent - able to control urinary and fecal discharge :-) And of course the answer is Yes for Adnin and Aqilah. But they need someone to take them to the toilet as usually the fireproof door (or rather the access door to the toilet) is heavy for them to open or the handle might be too high for them to reach.

There is another term that I need to look up to - 'can they weight bear'. It meant, can they stand bearing their own weight. Adnin can walk a short distance as her knocked knees cause her pain when she walks quite a distance. Her teacher even suggested that we request the school to buy a pushchair so that somebody can push her on her class field trips. As for Aqilah, she can easily stumble and fall; and as the result, she needs her hand held when walking so that she will not stumble and fall. I cannot forget the day that she ran as we approach our home and stumbled. Her head hit the pavement and was bleeding quite badly. Luckily I was not that panicked and able to handle the situation well.

Expert Meeting on Morquio Disease (MPS IVA)

How fortunate I am to be invited to attend the above meeting! It will be held in Hilton Northampton on 29/8 - 30/8/08. Being members of the MPS society, we are only charged £65 for the conference. The knowledge gained would be beneficial for us. Here are some highlights of the event :

• Understanding aspects of Morquio
• Clinical management of Morquio disease
• Living with Morquio disease
• Research and future treatments

There will be life testimonials or rather personal experiences of children affected by Morquio who have done treatments like cervical fusion, knocked knees stapled, surgical intervention of the lower spine and so on. I'm actually looking forward to the information on the Enzyme Replacement Therapy that they are coming out for the disease.

The conference is of course for the parents; the children will have their own social programme. There will be Gala Dinner for professional, familes and volunteers. Of course there will be halal food...

Is there any MPS case reported in Malaysia?

I have been in contact with the doctor that looked into Adnin's case back home. According to him there are cases of MPS reported in Malaysia but he did not specify the type of MPS. There are even cases of 3 siblings in a family that are affected with MPS. What a pity... He is aware of the Enzyme Replacement Therapy (ERT) and admits that it's expensive and funding is not available yet for MPS in Malaysia.

They have a society to look into this sickness called Malaysian Rare Disorders Society (MRDS) and the website is http://www.mrds.org.my/ which I'll surely join when I'm back.

I'm sure there are many more cases which are not reported of which I'm sure with proper treatment, the lives of children affected will be much better...