Charity
Little 'butterfly child' fights rare skin disease
  • | dtinews.vn | June 23, 2015 05:09 PM

A young girl with a rare inherited tissue disease is virtually alone, her father having left and her mother suffering mental illness, with only her grandmother left to watch over her.

Tran Huyen Nghi, 11, in Can Tho City has had epidermolysis bullosa, a connective tissue disease that causes blisters in the skin and mucosal membranes. since birth. Young patients with the disease are often called "Butterfly Children", because their skin is as fragile as a butterfly's wings. It has an incidence of about 50 in a million.

Nghi's skin peeling away

She was first treated at HCM City Hospital of Pediatric 2, but the family returned home after only two weeks because they could not afford the complex treatment, which involves gene therapy to change the keratins in the skin.

Nguyen Thi Be Nam, Nghi's grandmother, said, "I don't know where my son-in-law is living now. Nghi's mother fell ill and suffers from mental illness. She wanders alone all day and eats whatever she is given."

Nghi's skin often dries up and peels away in large patches, resulting in high fevers and considerable pain.

Tran Huyen Nghi

"Even the skin on her tongue is affected. The process lasts about 2 months before another cycle starts. I can only take her to hospital when the peeling is too severe because we cannot afford it," Nam said.

Nghi's skin becomes very thin and she cannot cope with heat or cold. She cannot go to school because other parents fear the illness will infect classmates.

Doctors have no cure. US experiments suggest bone marrow transplant may be effective, but the risk is extremely high and there is as yet no conclusive proof.

She keeps Nghi with her while she sells lottery tickets because no one else will look after her while she is working.

If you can help them, please donate through:

1. Code 1825: Nguyen Thi Be Nam from Qui Lan 3 Village, Thanh Quoi Commune, Vinh Thach District, Can Tho City.

Tel: 0127.229.0026

2. Compassionate Hearts Charity Fund – Dan tri Newspaper (Hanoi)

No. 2/48 Giang Vo Str., Dong Da Dist., HanoiTel: 04. 3. 7366.491/ Fax: 04. 3. 7366.490
Email:quynhanai@dantri.com.vn

* Vietnam Dong Account information at Vietcombank:
Account holder: Bao Khuyen hoc & Dan tri
Account number: 045 100 194 4487
With Bank: THE BANK FOR FOREIGN TRADE OF VIETNAM – Thanh Cong Branch

* US Dollar Account information at Vietcombank:
Account holder: Bao Khuyen hoc & Dan tri
Account number: 045 137 195 6482
SWIFT Code: BFTVVNVX
With Bank: THE BANK FOR FOREIGN TRADE OF VIETNAM

* Vietnam Dong Account information at Vietinbank:
Account holder: Bao Khuyen hoc & Dan tri
Account number: 10 201 0000 220 639
With Bank: Vietnam Joint Stock Commercial Bank for Industry and Trade – Hoan Kiem Branch

* US Dollar Account information at MB Bank:
Account holder: Bao Khuyen hoc & Dan tri
Account number: 0721100357002
SWIFT Code: MSCBVNVX
With Bank: MILITARY COMMERCIAL JOINT STOCK BANK - MCSB ( No.3, Lieu Giai str., Ba Dinh Dist., Hanoi, Vietnam)

3. Dantri/DTiNews' representative offices

Ha Tinh representative office: 46 Nguyen Cong Tru, Tan Giang Ward, Ha Tinh City. Tel: 039.3857.112
Da Nang representative office: 25 Nguyen TriPhuong, Thanh Khe Dist., Da Nang City. Tel: 0511.3653.725
Ho Chi MinhCity representative office: 39L Street 11, Ward 3, Binh Thanh Dist, Hochiminh City. Tel: 08. 66786. 885
Can Tho representative office:53/13 Ly Tu Trong, Ninh Kieu Dist., Can Tho City. Tel: 071.3.733.269

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