Lavanya Jaqtab has survived temporary blindness, weight gain, and hair loss, but continues to fight rare immunodeficiency condition called Griscelli Syndrome
(Far left) Lavanya before her ailment; the child today
All of four, Lavanya Jaqtab has spent more than half her life in and out of hospitals. Yet the tot's first question to her parents after being discharged from Wadia Hospital recently was, "Where has all my hair gone?" Lavanya, who was born to her parents after six years of marriage, has been diagnosed with the extremely rare autoimmune disorder — Griscelli syndrome — which has a very high mortality rate. Her devastated parents are now praying for a miracle after doctors have zeroed-in on a bone marrow donor who could possibly save her life.
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While the complications started when Lavanya was two and a half years old, the family from Aurangabad found out about her condition following a brain biopsy in Mumbai on June 15. The doctors confirmed she is suffering from Griscelli syndrome (GS) subtype-2 with hemophagocytic lymphohistiocytosis (HLH) that resulted in immunodeficiency. She needs a bone marrow transplant — a treatment with success rate as good as ninety percent, said a doctor. The doctors discharged Lavanya on June 16 and, in the meanwhile, they are counselling a donor who has come forward to help the little girl.
Signs of trouble since birth
She had silver hair since birth and her skin colour turned whitish over the years, and her speech was not clear as well, father Dhanraj told mid-day. When Lavanya was two and a half years old, she fell from her mother's arm and when we took her to the doctor, they told us there is swelling in her brain.
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The doctors tried to treat her with steroids, but instead of improving she started having seizures. Failing to understand her condition, the doctors in Aurangabad asked the parents to take her to Mumbai.
Lavanya with her parents
Temporary blindness
Her situation started deteriorating further when the parents, in December 2018, noticed Lavanya wasn't reacting to their presence around her. They realised she seemed to have lost her eyesight and brought her to Wadia Hospital. "After a scan, we learnt that there was swelling around her optic nerve, causing temporary blindness. However, with treatment, she regained her eyesight," said Dhanraj.
Lavanya had also gained weight after the treatment started over past one and a half years ago, and was finding it difficult to walk without support, said parents. She weighed around 10-11 kg before the ailment and now weighs about 15 kg.
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"My daughter has been suffering since so long. Her disease has taken most of her childhood. She doesn't know life outside the hospital. She is not even used to being around people. She hesitates whenever she meets too many people," said Dhanraj. "Priya doesn't move from our baby's side at all. She's terrified that if she'll leave her side even for a minute, she'll lose her," he added.
"My child was born six years after our marriage. We were so happy, but now we're seeing her battle for life," says teary-eyed Priya, Lavanya's mother. Dhanraj gave up his job in Aurangabad as he has to travel to Mumbai on and off for her child's treatment. When in Mumbai, he manages to earn measly R6,500-R7,500 monthly by taking tuitions and doing odd jobs. Till now, he has spent over R6 lakh on her treatment with the support of his relatives. For the surgery, they need R22.5 lakh, most of which has been collected through a crowdfunding platform — Ketto, which was started by the doctors at Wadia Hospital. "I am grateful, to all those who donated to save my child's life," said Dhanraj.
'90% success rate'
Dr Prashant Hiwarkar, Consultant, Blood and Marrow transplantation and Pediatric Hematologist, at Wadia Hospital said, "It is very rare case, she (Lavanya) had defect in her immune system that remains activated and acts against her own organs. At present, she has immune activation problem that had attacked her brain, liver and her bone marrow. This is a genetic defect in the immune system. Bone marrow transplant is the only treatment. Neurologically, she is behaving like a normal child, but this could worsen and can adversely affect her neurological performance if the bone marrow transplant is not done at the earliest. The success rate is as good as 90 per cent."
"We have almost found a donor for Lavanya and at present the donor is being counseled and once everything falls in place, we will call her for the transplant. She will need at least two months of hospitalisation for the transplant and year thereafter for monitoring. Once the transplant is done successfully, she will be able to lead a normal life." Hiwarkar added.
'No definitive cure'
Dr B Srikant, a paediatrician, however said GS does not have definitive cure. "This ailment (GS) is an autoimmune ailment, which unfortunately does not have any treatment, and mortality rates are very high. While bone marrow transplant is the only available treatment, it is very expensive and may not be always successful," he added.w
Rs 22.5 lakh
Money collected through crowd funding for her bone marrow transplant
'Thanks to the donors'
Dr Minnie Bodhanwala, CEO, Wadia Hospital, thanked the donors who came forward via crowdfunding to support Lavanya in such a short span of time. "Being India's first and largest tertiary hospital for children we always get rare and complicated cases from all over the nation and thus it has been our constant endeavour to provide all medical services for children under one roof. With the same vision we started our Bone Marrow Transplantation unit earlier this year and thanks to the donors and well-wishers we are able to help patients who could never afford such an expensive procedure. Thus, it is my sincere request to more and more people to come forward and support our noble cause," Bodhanwala said.
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