Jackie Chan Helping to Fight PMM2-CDG
March 31, 2016
Action hero Jackie Chan is giving a real life killer a kick.
This is not just a single kick, but one of Jackie Chan’s famous, martial arts, triple kicks.
He’s also turning a group of school children into philanthropists while he does it.
I was really surprised to hear that some of the school children I teach had contacted the superstar Jackie Chan, after they heard about my son, Finnan, in an assembly.
Finnan, aged 5, suffers from an extremely rare genetic disease called PMM2-CDG and the disease has left him severely disabled, as his cerebellum shrank dramatically before birth. He is left with little strength and balance, which means he will be wheelchair bound for life, he will never be able to talk clearly or be independent enough to care for himself.
Finnan having fun
In healthy humans, the gene for phosphomannomutase 2 (PMM2), provides instructions for making an enzyme called phosphmannomutase (PMM). In Finnan, these instructions are jumbled, because of a mutation in the PMM2 gene. Therefore, the enzyme (PMM) cannot be made properly by his body, and it cannot carry out the job it is supposed to do.
This job is to add sugar chains on to proteins, a process known as glycosylation, and it’s very important. Without sugar chains on the protein, the function it is supposed to perform is impaired, and this is what leads to the devastating impact on Finnan’s body. This problem with glycosylation happens in every single one of his cells, which in turn affects every single one of his organs, including his brain. The disease is called PMM2-CDG, where CDG stands for Congenital Disorders of Glycosylation.
The problem with PMM2-CDG, and in fact other genetic mutations that cause CDG (there are over 50, and being discovered so fast that even Wikipedia can’t keep up), is that so little is known and understood about them. There are very few researchers in the world looking at CDGs and there are no treatments for all the types except one or two. There is no treatment and no cure for PMM2-CDG yet.
If everything we know was bound in one giant circle of knowledge, then the realisation of a cure to Finnan’s disease lies just outside it. I will always have hope. But until then life for Finnan is not easy, and I try to make his life as comfortable and happy as possible.
That is where my school children and Jackie Chan stepped in.
Marko, Chris, Penny, Tiffany, Sam, Finnan on Mum’s lap, Jack, Oliver and Ian
I was amazed to learn that the kind hearted Jackie Chan was so impressed that my group of school children had found a cause they wished to raise money for, that he immediately sent a video message to say how moved he was and sent a giant package of items, designed and signed by him! He had even added movie posters and DVDs signed by his extremely famous co-star, Donny Yen.
The pupils have decided to hold on online auction to raise money for Finnan’s charity, Funds For Finnan, in order to buy him things that able bodied children have, a specialist bicycle, for example, and a physiotherapy bench for home. Finnan currently has the same physical ability as a six month old baby and the cognitive ability of a two year old. This video shows Finnan playing.
The pupils are hoping that with their support, it won’t be too long before Finnan can perform some little karate kicks of his own.
Lots will be listed throughout MARCH and APRIL so keep checking for new Jackie Chan collectors’ items!
If you would like to bid for some of the items signed by Jackie Chan or Donnie Yen, or if you would like to donate to Funds For Finnan, please click on this link to Finnan’s homepage:
Sign up for updates straight to your inbox.