Newscut Name 姓名: Mason Lee Yung Er 李滽和
Age 年龄: 4
Condition 病情: Krabbe氏症(球細胞腦白質失養症)

Links:
Article: Nanyang Siang Pau
Article: China Press
Article: NTV7
Article: 8TV

Updates 22/10/2018

As of today, we collected RM 700k. We are getting closer to the target (RM2.2mil.) everyday. Please help to share this post and encourage more donation so that we will be able to send Mason for boon marrow transplant soonest!

Updates 13/10/2018

Mason Lee Yung Er who is almost 4 years old was diagnosed with an extremely rare disease called Krabbe disease (also known as globoid cell leukodystrophy), and he urgently requires RM2.2 million to undergo a bone marrow transplant procedure in the USA.

When little Mason was born with his twin brother, Carson Lee Jun Yue, his growth seemed as normal as the other children, although he was a slower learner than his brother. After he turned 1, he started to show symptoms that alarmed his parents.

His mother, Joyce Moong Lee Ping told reporters, when they went travelling to Australia in 2016, Mason had a seizure and had to be sent to the hospital. He was suspected of having cerebral palsy.

When her family arrived back to Malaysia, Mason was sent to HKL for further blood tests and imaging, and he was referred to many different doctors in relevant specialties. They later determined that Mason did not have cerebral palsy or was suffering from meta chromatic leukodystrophy.

“On January 9th this year, HKL clinic for genetic disorders told us they sent a sample to Japan for genetic testing and found that Mason was tested positive for Krabbe disease. The hospital recommended that we sent a blood sample to Australia to undergo galactocerebroside (GALC) test to confirm.

According to Joyce, after 2 years of scrambling for answers, the laboratory in Australia showed that there is a defect in Mason’s galactocerebroside enzyme, proving conclusively that he has Krabbe disease.

She mentioned that because the hospitals in Malaysia and Singapore lacks the medical expertise dealing with treating this disease, so under the guidance of family members, they have managed to find a doctor in New York that specialises in this disease.

When the young boy arrived in the US in September, the doctor told them that the progression of the disease is affecting his vision and said that he required surgery immediately to stop it. The procedure is estimated to cost about 500,000 USD. Joyce has tried her best but was unable to acquire that much money.

Joyce added that because his twin brother – Carson has a compatible bone marrow, there is a much higher chance of survival for Mason.

She had fought with her husband multiple times over the decision to let their sons undergo this bone marrow transplant. Knowing that there is a chance to save Mason’s life, she comes forward with a plea to the public for financial assistance to save her son’s life.

Krabbe disease, brief explanation:

Is a type of disease that affects the nerves. Due to a deficiency in an enzyme called galactocerebroside (GALC), nerves are not able to properly coat itself in the process called myelination. Myelin are coats the nerves in order to help conduct signals quickly and also to protect the nerves from damage.

This type of disease caused by demyelination is classified as a type of leukodystrophy. It is because in Krabbe disease, abnormal globoid cells are observed, hence it is also known as Globoid Cell Leukodystrophy.

The patient appeared normal in the first few months after birth, but started showing symptoms even before his first birthday.

The earlier symptoms were characterised by restlessness, weakness, trouble feeding, unexplained fever, rigidly straight posture, slow heartbeat and etc. The deterioration of psychomotor abilities can be deduced from the increase of involuntary movements.

The patient may show early signs such as restlessness, muscle spasms and slow development. As the disease progresses, the child may begin to lose control and experience long periods of muscle weakness. This will later also affect the ability to move, chew, swallow and breathe. The patient may lose his sense of sight and may also experience seizures.

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