Monday, July 14, 2008

Wei Ling Can Stand Up On Her Own!


Since Wei Ling started walking, it was last January that she acquired this skill. However, her lower limbs and waist muscles are still not strong enough to hold her from squatting position to standing position without any support.

I told her that she will need to acquire this skill if she wants to go to school like her brother. So, I started to get her to hold on something and pull herself up. However, it was a very tiring exercise for her; she will refuse most of the time.

So, I asked her to crawl on the floor instead. It was more fun that way and she was more willing to do it. This way, she strengten her knee and waist muscles. Still it is not good enough to give her the energy to stand up on her own.

Then I asked the physio therapist in the hospital how to make her stand up on her own. He said she will need to strengten her overall leg muscle. He taught me to get Wei Ling to sit properly and lift up and hold the alternate leg one at a time.

However, Wei Ling did not like it very much too. So, I ask her to do lots of crawling. As time went by, she slowly strengten her lower limbs muscles. She started walking faster and faster as if she was running. Though she was not in her running posture.

Later, I taught her how to do squatting. Initially, her knees are not strong enough, both knees will fell to the floor. Slowly, I convience her to do more whenever I have a chance especially during the night that Yen Ling and Sze Hong was practising Chinese Wushu. It's much easier when we have a big open space and everyone was exercising.

Then, I taught her to hold on to her own knees & slowly moved herself up. That way, she will be able to stand up on her own. Every little step that is easily conquered by any other normal child will typically take weeks to months of practices.

For months, Wei Ling was only able to hold herself quite high up but not high enough for her to lift up her entire body. If she moved on further, she will fell back down.

In mid Jun 08, Wei Ling stood up on her own without any support finally. We camered down the wonderful scenes and gave her a big applause. She was so happy. She still falls down few times every time before she could stand up on her own. But that's a great break through for her. It's another important milestone chart her.

Now, it's getting easier to ask her to go wee wee or doing 'big business' on her own. Still, when she is lack of energy or the case is too urgent; she will still look for adult's help.

Hurray!!!

Wrote in 14 Jul 2008

Something Joyful to Share...

Another victory story for another Pompe family. Yeah....This time it's in Sarawak. This family also has got 2 Pompe children. It's the story of a sister and a brother. The mother is a single parent. She is such a brave and loving mother, she takes up the whole responsibility even though it is such a tough one...

Both Bong's sibling were borned to be as normal & as healthy as any other kids. They had their mischiefs and were going to kindergarten as any other kids too. However, Mdm Bong noticed something was wrong with her elder girl. She started to show weakness on her lower limbs, she would fall down very easily and she started to get sick quite easily too. Soon, the younger brother also started to show similar symptom. Both their health condition deteriorate slowly.

Only after 2 years of finding the root cause (from 1 discipline to the others) that Mdm Bong was finally given a name for her two siblings. They were diagnosed to have Pompe (Glycogen Storage Type 2), a very rare inherited metabolic disease. This was not an easy moment, she almost collapsed as the doctor told her that her child might have an early death as compared to other kids. However, the doctor told her too that there is a group of scientist and doctors that are doing researches to come out the with humanised enzyme to treat the problem. That was in year 2001...

However, this family was not that lucky as the research target was on "Infant" group. They belonged to "Juvenile" group, they could not be taken in for human candidates for the enzyme trial runs. Even though they were diagnosed to have problem, nothing can be done except waiting. Their body started to deteriorate more rapidly that they finally lost the ability to walk & breath on their own.

Finally, after waiting for 6 solid years; they were finally given a second chance. They started on Enzyme Replacement Therapy (ERT) Jun 08. I am very sure if they follow the doctor's advice strictly, great improvement will be seen. Let's us all pray for them that they are going to have very positive response to Myozyme that one day they will be able to walk & breath like any other normal person. Their response is critical in deciding if the drug supply will be a continuous one...


Wrote in 14 Jul 2008