Harian Metro - Budak Istimewa LSD

We appear again in a local malay newspaper...

Every life counts

Celebrating world rare disease day...our local paper covers our recently launched campaign. Be our friend by clicking 'like' at Facebook - Malaysia Lysosomal Diseases Association or go to our website www.mymlda.com and sign up as a friend...

2nd appearance on TV

Shortly after their appearance in Wanita Hari Ini, they appeared again in 'Nona' of the same TV3.

Adnin & Aqilah's first TV appearance

We've been invited for a live show 'Wanita Hari Ini' on 19th October, 2011. Full video of the program can be viewed below. It's in malay language anyway!

More and more awareness

Since the kids' story appear in the newspapers, more and more awareness is on the way. Last Sunday, we were at Grand Millenium, Jalan Bukit Bintang for a soft launch of our association - Malaysia Lysosomal Diseases Association (www.mymlda.com). Adnin and Aqilah were invited on stage to share their experience being Morquio kids. We had special visitors from Taiwan MPS society - among them, two sisters who are also Morquio kids. They presented some flower necklace to the VIPs, and Adnin and Aqilah, representing the MPS kids here. It's really touching to see the adults having had to kneal down really low for the Morquio kids to be able to put the flower necklace on them.

Adnin and Aqilah on stage. They are really adorable...

KF facilitation the session, and me playing supporting role :-)

The VIPs with the Morquio kids

The poster

All of us together

The best part of it, after Dato' Yeow officiate our association, the video http://www.youtube.com/watch?v=yECd3tl2DQY was shown. It was really touching indeed and tears rolling down our eyes. Our hardwork in establishing this association has materialized! Congratulations to all!

Star newspaper coverage

Our story appeared in the Star Newspaper recently covering the MPS Awareness Day at TNB Seremban on 8 July, 2011. I had another chance to give a talk, sharing Adnin & Aqilah's experience. This time it was done in Malay coz' the audience include heads of villages around Seremban and Nilai. Prior to the talk, the reporters interviewed me. I didn't realize that the story was out on 16 July, 2011 until Adnin's teacher and few other staff told her that they read her story in the paper. When my collegues saw me at the office, they also said, "I saw you in the paper...". I'm glad that the message gets across - the awareness about this rare diseases so that people like them are well taken care off.

The kids had an appointment with the spine specialist last Friday. X-ray was done and they detected scoliosis on Adnin, about 20% curved to the side and is due for another x-ray in three months time. Aqilah is free of scoliosis at this time; initially I thought Aqilah's spine is worse that Adnin's. Could it be that the alternative treatment has shown some progress on Aqilah???

Height wise, Adnin shows a very good improvement, she was 98 cm and Aqilah 92 cm using the hospital's scale. I've yet to measure them at home.

So far, they have no complains whatsoever, they look healthy and really looking forward to Ramadhan. I'll teach them to pray that they will get the enzyme replacement therapy soon so that they can grow bigger :-)

Had a great time at the conference

I had a great time at the First Malaysian Rare Disorders and Medical Genetics Conference held at Armada last week, June 9-10, 2011. Among the attendees of the conference were patients and families of rare disorders, government department staff who work with persons with disabilities, NGO’s, doctors, nurses, medical scientists and many more. I have been given the honour of presenting at the planery session on the second day, sharing experience of Adnin and Aqilah who were diagnosed with Morquio Syndrome or MPS IVA.

I did not bring along Adnin and Aqilah on the first day because I thought the complimentary registration was for me alone. It was alright because during the first day I had the chance to concentrate on the conference listening to the presenters. The one I like most was the presentation on ‘Rare disorders and basic genetics 101 by Prof Thong. I like his analogy of explaining how the rare disorder happens, by saying that those affected by rare disorders have spelling errors in their chromosomes, in the case of Adnin and Aqilah, the error was at chromosome 16. If we could imagine, the chromosome like chapters in the book, and chapters has sections and paragraphs (choromosome contains about 30,000 genes), the spelling errors must be at on of the paragraphs. How I wish we have a correction tape or liquid paper to correct the spelling mistakes that have happened in Adnin and Aqilah’s genes…

I brought along the kids at the conference because they are the subject of my talk. The presentation went well, I was supposed to talk on the education and childcare and since the kids had experience living in the UK, I highlighted how the developed country care for children with rare disorders and compare it here. The sharing of experience touched the hearts of many, especially when in the end I showed a video clip on the kids highlighting that they were selected for the clinical trial on enzyme replacement therapy but didn’t get it because they are non-residents.

The president of MRDS (Malaysian Rare Disorders Society) met and congratulated me on the presentation; she was amazed to see how happy the kids were in the pictures I showed during the presentation. This is actually the image that we should portray about the kids who are affected with the rare diseases. They are children with ‘different abilities’ and not with ‘disabilities’. Our media likes to show the disabled persons as the ones who need sympathy, maybe they need to change their mindset. Every person is unique, it is unfortunate that they have the rare disorder, but they should not be treated differently. I’m really touched at the beginning of the conference, Amir (achondroplasia) and William (who has William Syndrome), played beautiful songs with the keyboard. Who knows what other talents the children with rare disorder might have.

Adnin and Aqilah were like stars when many people came and see us afterwards to have a closer look and to take pictures of them. A medical professor came and ask permission to use my video clip to show to her students back in her country. I have uploaded the video on youtube at this link http://www.youtube.com/watch?v=kljW4D42XzI under the title of Morquio Syndrome – the story of Adnin and Aqilah. Dubbed with Maher Zain’s Hold my hand, the video clip really touched other people’s heart. On another note, there are also some opportunities for the kids that we are going to explore, I’ll write about it later.