Save our little Khang from a rare disease

Save our little Khang from a rare disease

USD 4,633.00

raised by 61 people

to Nhung Le, Khang's aunt
nhung le is a Family member of the beneficiary.

Dear all,

I am an aunt of toddler Khang and writing this letter to you on behalf of Khang’s parents. Our wish  is to raise fund for our child’s treatment against Langerhans Cell Histiocytosis (LCH) disease, a rare and aggressive autoimmune disease that is related to leukemia and lymphoma. Some consider this a rare kind of blood cancer. He is now being treated in KK hospital in Singapore, without any medical insurance. 

Khang’s story with LCH

Khang was born in November 9th, 2013 in Thanh Hoa,  Vietnam. He has been sufferingfrom LCH since he was 15 months. He had some clear symptoms of LCH such as many small blister lesions on the inside eye lids, body, face, head, penis, nose, throat…and strong inflammation on nails and the penis. All together they have been causing  a lot of pain and suffering for our little boy. 

Khang at 15 months old before getting sick 

Back to the first days when we just recognised those symptoms on Khang, we visited to at least 3 national hospitals and many other small clinics in Vietnam for examinations and treatments. However LCH had not been discovered and even got diagnosed differently. No good treatment was administered for over 11 months.

Khang’s first symptoms were recognized and were treated rudimentarily in Vietnam.  The inflammation worsened and spread.

Since the disease had got worse and worse, in February 29th, 2016, we decided to take Khang to KK hospital in Singapore and LCH was first diagnosed there. Since then, he has been treated in Singapore. At first, he went through an oral medication phase. At the same time he had surgery for phimosis and narrow urethra. However the condition of LCH disease didn’t improve much.  Some LCH lesions were detected in the bladder during the surgery. The doctors then decided to treat him with chemotherapy since September, 2016. The first treatment period will last for 12 months and it may continue depending on the disease condition.

The cover photo was taken in February 2017, 5 months after chemotherapy. He seems to response well to the chemotherapy currently. The blister lessons on the body and the nail inflammation are much reduced. We really hope it can save our little Khang! However he is still in critical phase of chemotherapy and the doctors still can not anticipate how the disease develops.

Khang after the operation for phimosis and urethra.

Medical expenses 

Up to September 2016, Khang's parents have spent 36 475 SGD for all the treatments, check-ups and an operation in Singapore alone:

  • Oral medication phase costed 17 721 SGD.
  • Operation for phimosis and tubing costed 16 326 SGD.

Here are summary and details of medical bills until September 2016:

It is estimated that they will need to pay at least 12 800 SGD more for chemotherapy. It will cost even much more in the long run because patients with LCH should usually have long term follow-up care to detect late complications of the disease or treatment. 

Traveling and accommodation expenses 

They has  traveled to Singapore 6 times, about once a month. The cost for traveling and accommodation until September 2016  is 17 500 SGD. For the chemotherapy,  we  try to reduce the cost by asking permission from doctors to bring the medicine back to Viet Nam for treatment. However the doctors still need to keep track of his condition  in Singapore. As a result we need to come to Singapore every 2 months.  Therefore we expect to travel at least  6 times more (about  9 000 SGD ) for the chemotherapy.

We are at the end of our means!

All the medical expense is paid without any insurance because no insurance in Vietnam covers for treatment abroad. However due to the rareness of the disease and we have no other choice than having treatment in Singapore. The parents make 520 SGD per month combined. And now they have been off too much from work (taking unpaid leaves) to take Khang to the hospitals and to take care of him. Khang’s mother now is not working at all in order to have time to look after him. Their family and friends have been doing everything they could to support them, but it is still far from enough! The situation is unbearably hard!

Fortunately and thankfully Children Cancer Foundation of Singapore has supported us 12 000 SGD for paying medical bills at KKH since October 2016. This amount has been used up mostly for the re-examination of the bladder (due to some lessons found inside before).

Khang’s parents are now still 54 000 SGD in debt.  So we don’t know yet how we can continue with Khang’s treatment (at least  21 000 SGD more).  Therefore we are putting all our hope now on the generosity of good people out there. 

Your contribution, no matter how big, helps us to save our boy’s life. We will never give up! But please help us to bear this burden. We thank you from the bottom of our hearts!

Nhung, Nga, Chien (the parents) and Khang