Two little girls with rare diseases like aliens make anyone who meets them is heartbreaking
Looking at the two playful girls, laughing, talking, the young mother’s heart aches, with a fervent wish that her children could be free from illness.
After a month when I posted the article “Quang Tri: Two Sisters Afflicted by Rare Disease Resulting in Twisted Necks – A Heartrending Sight”, the family has received attention, support in both material and spiritual aspects. Up to now, more than 130 million VND (Vietnamese Dong) has been sent from kind-hearted individuals to support Tuyet and Nhi in their journey to overcome the disease.
On July 9th, the family brought Tuyet and Nhi to Xanh-Pon Hospital for their first medical examination, where I also had the chance to meet them, to inquire, and to listen to the heartfelt sharing from the mother about her two precious daughters.
Tears flow freely every night from the mother’s eyes for the past 5 years.
Wiping away the tears, the heartfelt compassion, and the profound sorrow that pierces through the depths of her heart, the young mother of Hoang Thi Bach Tuyet (7 years old) and Hoang Thi Yen Nhi (4 years old) remain in the village of Lang Toi (Yen Nguyen commune – Chiem Hoa district – Tuyen Quang province), burdened with the rare and first-ever diagnosed disease, sharing about her two beloved daughters.
Mrs. Si Embraces Her Two Daughters in Her Arms at Xanh – Pon Hospital After Surgery
My story revolves around my two daughters, Chị Đinh Thị Sĩ, who always smiles affectionately, looking gently at my two daughters. For many people, the comical appearance of my two girls might be likened to “foreign dolls,” but to me, they are two little angels, both fragile and endearing.
The family of the two girls, Tuyết and Nhi.
“My husband, Toan, and I got married 8 years ago. Our life has been tough and impoverished, but despite that, we both strive to work hard to earn money for our livelihood and to save a little for our children’s future. Then, unexpectedly, a few months after our marriage, I became pregnant. At that moment, both of us felt immensely blessed and joyful. We thought that in the coming years, our family would have cheerful and adorable children, full of love, growing up in the warm embrace of our love,” recounted Mrs. Si.
On the day of her birth, her parents named her Bạch Tuyết, because she was very white, as white as snowflakes, like a fairy tale.
Bạch Tuyết grew up in a loving and warm family environment until she crossed the threshold of her seventh birthday. At that moment, when there were no birthday cakes, no lit candles, it was also the time when little Bạch Tuyết unexpectedly showed a strange manifestation that made both parents bewildered, unable to understand what was happening with their daughter.
Despite her disabilities and severe illnesses, Bạch Tuyết’s intelligence blossomed, showing a normal child’s development. Bạch Tuyết – the most inquisitive of the family, engaged in a game on her phone.
At the age of 2, Bach Tuyet began to exhibit unusual symptoms that left both parents bewildered and concerned about what might be happening with their child. Her body contorted and her spine and neck showed signs of deformities, gradually becoming more pronounced. She started crying more often, and I felt helpless…,” her mother recounted.
And then, from that moment on, both parents embarked on a long journey of seeking answers, grappling with the enigmatic mystery of their daughter’s rare condition…
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Filled with deep compassion for my daughter, my wife and I, with no other options, resorted to performing manual labor to earn money for Tuyet’s medical treatment at the hospital.
“Even after working hard and earning a few million dong, we are still struggling to bring Tuyet to medical appointments, get her treatment, and buy medication. Over the past five years since Tuyet was diagnosed, I have lost count of how many times we’ve been through this,” said Hoang Van Toan, Tuyet’s father, with tears in his eyes.
Nhi, a newborn baby at the time, faced dire circumstances from the outset. Her parents, who had just given birth to their second daughter, did not anticipate any illness like their firstborn. However, Nhi was afflicted with this severe condition…
“After curing two children, what else do I have to sacrifice?”
After a period of trying and with the help of your readers, local benefactors, doctors, and nurses, on July 9th, both Tuyet and Nhi were brought from Hanoi to Xanh-Pon Hospital for medical examinations.
Learning that the family had brought both girls to Hanoi for medical treatment, many kind-hearted people, including readers, contacted us to meet, chat, and share their sympathy as well as offer support to the challenging situation of the two little girls, Tuyet and Nhi.
The boy named Nhi has a swollen face, sparse hair, and protruding eyes.
Even when I first met Nhi, it was surprising that he looked like a child under 1 year old, despite seeing many photos sent by the family. Moreover, as Nhi reached 7 and Nhi reached 4 years old, they still appeared to be younger than 1-year-old infants.
Even their limbs, torso, and limbs, unlike normal infants, show signs of developmental delay. Their hands and feet, including both hands of Nhi and Nhi, cannot be stretched; their ankles are immobilized, and some fingers of the two children cannot be extended. Their heels are showing signs of transformation as well.
Nhi-Nhi loves wearing beautiful clothes and is excited to wear new shoes provided by their parents.
However, both hands and feet are undergoing transformation.
Particularly in the head area, both children have a larger than usual appearance and very little hair, with visible blood vessels on the skin.
Many people couldn’t hold back tears, some even dared not look at their eyes before the pitiful image of the two extremely thin children.
Even their hands and feet are malnourished.
Headstrong Bald Baby Tửyết and Brave Little Nhi”
Baby Tửyết has a more rounded head than Nhi.
“As a woman, anyone would understand the deep pain Chị Sĩ went through for the past 5 years with her two daughters who suffered from this disease. We only hope for the two children to receive proper medical treatment and regain a normal life, just like any healthy child,” shared Chị Lân – a family helper.
Although both children have an appearance resembling older kids and their heads are always tilted to one side, their intellectual development is quite impressive. When asked, they respond. When someone does something kind, they show gratitude. They know more than what is expected for their age.
“Our grandchildren know more sorrow than their parents, they know how to use phones and play electronic games to communicate well with everyone. However, due to their congenital malformation, their speech is a bit difficult to understand, perhaps because of the scarred throat…,” Chị Sĩ shared.
Before the family brought both Tửyết and Nhi back to Tửn Quấn, Chị Sĩ promised with tears, “Why must my wife suffer this pain? Why did heaven make us take on this burden with our two children? Now, we only wish for the two children to be cured, to be healthy and live like any other child, and there’s no need to change anything more…”.