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.

Rare Disorder & Medical Genetics Conference

I set up this blog four years back just to give awareness about Morquio, and I can't believe that I'd be giving a talk to share experience on raising children with rare disorder at a conference. One of the organizers of the conference actually found this blog and contacted me inviting to be one of the speakers. Why not eh? The topic is really close to my heart and I'm sure the words will flow out smoothly from my mouth.

The kids are doing fine; they are having their mid year exam this week and will have their school holidays for two weeks beginning end of this month. There is no appointment coming, the closest one would be in July with the spine specialist. On top of seeing the specialist and get conventional treatment, we brought the kids for an alternative treatment too. So far so good, the kids have good appetite and show a very positive attitude to heal and grow bigger and taller too, I hope :-)

We have been invited to the launching of Malaysian Rare Disorders Society’s (MRDS) book “Rare Journeys of Love” this weekend. I can’t wait to get one. I recently read a book “Atiq Wazif – Satu Anugerah”, a very touching real story about bringing up a special child, went everywhere (China, Middle East and the USA) to get treatment for the special child. I’m just thankful that I wouldn’t have to get that far of an effort to raise Adnin and Aqilah. They are pretty independent in managing themselves that we only have to monitor and help them a bit, here and there. The only challenge is to answer their questions of why they are like that and when are they going to be cured. Children with MPSIVA have normal intelligence, they think like children of their own age. I guess I have to play more on psychology to instill positive attitudes in them, so that they can be successful like others even though they are physically small.

Corrective surgery

The kids had appointments with the genetics doctor and the orthopedics yesterday. Sad to say, the clinical trial will not be conducted at the hospital. Don't know whether the hospital is not qualified as a center or probably the proposal has not been approved somewhere up there. Oh well...

In the meantime, we have to concentrate on the corrective measures to ensure that the kids have quality lives. We had the opportunity to see the specialist in child orthopedics at the hospital and have planned some corrective surgeries for the kids. From the recent x-ray, Adnin's 8 plate screws need to be adjusted because it has reached the maximum dilation. She may have to undergo surgery to have them fixed at proper position. As for Aqilah, her knocked knees have gone worse and she also have quite tight hemstrings that need to be loosen. We have planned for the surgeries to be held during a long school holidays which will be in November.

The kids also need corrective surgeries at their hips because their bones are a bit out of the sockets so as to prevent dislocation.

As for the spine, the MRI results showed the cervical compression which is normal in Morquio kids. They are referred to the spine specialist for further investigation. So far, the kids have not shown any abnormalities or feel any pain with regard to their spine. As long as they are okay, I’d prefer for them not to have any surgery at the spine coz’ the area is very delicate. I’m happy with their condition now, and can’t bear the thought of them being bedridden whatsoever…

Adnin and her new glasses

The kids had an appointment with the ophthalmologist or eye doctor last week. We made it to the clinic after so much hassle to locate it, ending up not seeing one. Why? Because the clinic was so packed even queueing on the special lane (OKU), we had to wait for around 26 patients!

We ended up visiting the private optometrist as Adnin was complaining that she can't see very well. Once checked we found out that she has a lazy eye, with high astigmatism, around 150 and 200 (can't remember which eye). The reason being is that her eyeball is not properly shaped. Her spec's power is only 50.

We went to pick up her glasses last night and she looks good on it. She feels good too, not having to rub her eyes every now and then. Today is her first day in school with the glasses. Quite eager to find out how her friends respond to it.

Aqilah is looking forward to getting eyeglasses too but I told her she will have hers in two years time. In the meantime, she has to eat lots of carrots like rabbits :-)

More and more appointments

The kids have to attend more and more appointments - dental and ortho on 12/1, MRI on 24/1. Actually they had rehab on 13/1 but had to miss it. We have decided that those not really important, we have to skip it. Too many appointments will certainly disrupt their schooling. Moreover, we have to plan our leaves too because everytime we go for an appointment, we certainly need to take leave.

During the recent visit for MRI, the kids were scared to go into the 'tunnel'. No choice, I have to accompany them. Don't know how much radiation has got into me. Will it make my cancer worse? I hope not. It was really dreading to listen to the MRI noise, I brought in my book to read while holding their feet :-)

The next appointment will be for skeletal survey. We have seen the orthopedic doctor on the 12/1 and in order to see the progress of the bone, they need to be x-rayed. At this point of time, both of them can walk a small distance. The father has to carry both of them when we go quite a distance like walking to the nearby medan selera for lunch (during hospital appointments). Luckily they are quite light, total weight is around 25 kg.

Of course, wherever we go, people will ask about them, how old are they and what causes them to be like they are. As some point, I get tired of answering. Probably I should write a book about them so that whenever people ask I can just sell the book to them :-) Not a bad idea eh!