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 15/11/2018

Dr Escolar from the US have sent the following email to Mason’s parents on 8th of Nov 2018:

“We have been waiting to hear back from you. Do you have the visa? Time is of the essence and if he does not receive a transplant it will be too late. In this circumstance, it will hurt him more than help him. It is therefore very important that you make a decision so that we can continue to support you with whatever you decide. Just let us know, we are all ready to help. All the best.” – Dr Escolar

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 USD500,000 (Approx. RM 2.2 mil. ) to undergo a bone marrow transplant procedure in the USA. However, as of 15th Nov 2018, Yayasan Nanyang Press only collected approx. RM 1 mil.

Considering the urgency of sending Mason for the bone marrow transplant as explained by Dr Escolar above, the top management of Yayasan Nanyang Press was very kind to take up the risk and guarantee the balance of the fund needed so that Mason and his family can proceed to the USA for the necessary procedures.

We met Mason and his family last Sunday. When his twin brother Carson was asked, “Are you ready to go through the surgery and donate your bone marrow transplant for your brother? Without further hesitation, he replied, “Yes!” . Their parents smiled with tears in their eyes. After a while, their mother told us that Carson told her a few times that he in fact terrified to go for surgery. But he truly loves his brother Mason. It is indeed a tough decision for an adult. What’s more to say for a four year old boy! Proud of you Carson!

Their USA Visa was approved this afternoon. The family will be departing from KL on 16th Nov 2018 and landing USA on 17th Nov 2018. The family and Yayasan Nanyang Press had done our very best to support Mason but we need all of your support to create the full conditions required for miracle to be actualized! Please hold on together and support us with this fundraising and sharing of this post! Our collective love and compassion can be a powerful wish-fulfilling tool to save a life and give hope to many other patients with the same syndrome!

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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