Mayuri's story
Mayuri was born in 2009 without any birth complications, leading a normal childhood. Her family resided in Dubai until she turned 3 years old.
When Mayuri was 3, her parents made the decision to relocate to New Zealand. She continued to grow up healthily, achieving all her developmental milestones. By the age of 5, she began attending school as a cheerful and friendly little girl. Her teachers adored her, often praising her for being the quietest and most well-behaved student in the class.
At the age of 8, Mayuri's teachers noticed an unusual difficulty while she was writing, she repeatedly lifted her shoulders in what seemed like involuntary movements. This concern led to a referral to a general pediatrician, who then directed her to a neurology specialist.
Following a series of blood tests, MRI scans, and DNA tests, Mayuri received a diagnosis of H-ABC, an incurable and rare condition. This condition led to several severe complications as it progressed, including Dystonia, Scoliosis, and consequent anxiety for Mayuri.
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Her condition progressed gradually, she began experiencing balance issues, followed by involuntary movements in one of her hands, difficulty in speech, and worsening scoliosis, leading to her right shoulder appearing lifted as if she had a hunchback.
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Mayuri used to have many friends, and each year, we would host a small party for her with a list of 10 friends from her class. However, as her condition deteriorated, she gradually lost her friends as she couldn't participate in activities like running or playing like other children.
She often asked why this had happened to her, questioning what she had done to deserve such a challenging fate.
Mayuri has a deep passion for dancing, swimming, and playing football with her dad. She also enjoyed playing Roblox, especially as she began to lose touch with her real-life friends and sought companionship online. Spending countless hours in the virtual world, she immersed herself in activities that were not feasible in her physical reality.
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Additionally, Mayuri is a true food enthusiast. She delights in eating a variety of foods, enjoys cooking, and is particularly fond of watching the Australian version of Masterchef.
In 2021, Mayuri welcomed a baby brother into her life. She was overjoyed and thrilled to have him around, and her greatest desire was to hold him close, despite the challenge with just one functioning hand. She spent countless hours sitting with him, watching him sleep, attempting to read books to him, and playing with him as much as her physical limitations allowed.
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Surprisingly, her baby brother reciprocated her love just as much. He adored her and would often follow her around, giving her hugs and playing with her hair, creating beautiful moments of joy and connection between them.
On May 28th 2023, Mayuri was hospitalised due to severe vomiting. After a week of extensive tests and examinations, doctors diagnosed her with SMA (Superior Mesenteric Artery) syndrome. This rare condition occurs when two major blood vessels in the abdomen, the aorta and the superior mesenteric artery, press against each other, causing compression of the small intestine. Symptoms can include severe abdominal pain, nausea, vomiting, and weight loss.
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Due to SMA syndrome, Mayuri faced additional complications during her hospitalization. She lost her ability to eat, walk, and talk, and her scoliosis worsened, leaving her bedridden. She became dependent on Total Parenteral Nutrition (TPN) for daily nutrition, as she could no longer eat or taste food.
After 8 months in the hospital and achieving some stability, Mayuri was discharged and returned home. However, her scoliosis continues to worsen, causing her significant pain and discomfort that affects her sleep. Despite the challenges, she refuses to use her wheelchair or go for walks due to the pain caused by her curved spine.
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Doctors are refusing to perform spine correction surgery on Mayuri, citing her high-risk status. However, without surgery, she faces ongoing suffering for the rest of her life. To improve her quality of life, we are determined to raise funds to take her to another country where she can undergo spinal surgery and have a chance at a better future.
