Trisha was born a healthy baby and started growing up like any normal child would. All her routine check-ups were very normal. But when she was nearly 15 months old she could barely walk, and we started feeling a bit concerned. She started walking without any support at 18 months.
Trisha was our first child and we did not realise that it was odd she could not recite a single nursery rhyme or even write her name, compared to her peers at that age. She began to learn these skills when she started her kindergarten (4 years old).
Trisha was clumsy and a bit slow in almost all activities, such as playing on the playground, or climbing up a slide. She never attempted to go on equipment like the jungle gym, chin-up/monkey bars, or climbing walls. Over the years it started to become very obvious to us that she did not have the strength or coordination to be able to complete these tasks.
Trisha has never been able to play outdoor games with her peers; she still cannot run more than 2 to 5 meters at a stretch. She is not able to comprehend how to jump on a spot or do many physical activities that other kids can do without effort. Her sister, her cousins, and her family friends all go out for bike rides however, Trisha is unable to join them as she cannot even balance herself on a bike.
Trisha has severe learning difficulties; she has an aid teacher at school that helps her with one-on-one learning on a special curriculum. With all the extra support Trisha still finds it difficult to improve her basic reading and writing skills.
Trisha needs support with daily activities such as dressing up, washing, and keeping safe in the community. She also needs support in public areas and needs to be reminded of the basic hazards around her.
Trisha does not have any confidence in her decision making. She is never sure if her decision is right or wrong, as a result, she gets confused easily. Due to a lack of confidence, she hesitates to do things independently, whether it is in her classroom or playing with her peers. There is not a single day in Trisha’s life when she is not left out of a game or a task due to her disability. When all kids get to gather and play, Trisha struggles to join in and keep up with the rest of the group.
Trisha has NO friend and she feels very lonely at school. It is very hard to see your child left out and unable to join other kids of her age in any fun activity.
Due to an underlying disorder, Trisha has developed scoliosis. As a result, she has to wear braces to prevent the progression of her scoliosis. She finds it very difficult to wear braces 24/7 as she already struggles to perform basic physical activities, such as getting up from a chair or sitting cross-legged on the floor of the classroom.
Also, due to her condition, she has to make regular visits to the hospital. This has a huge impact on her and our family. Trisha struggles to understand why she has to make these frequent visits to the doctors, and for us as parents, it never lets us forget even for a single day that Trisha is not a normal child.
Trisha was also diagnosed with knock knees for which she has gone through a correction surgery.
Trisha is a very lively girl who enjoys dancing and singing. Trisha is also a foody; she enjoys trying out new cuisines and also loves cooking and baking. Trisha wants to start her own YouTube channel where she would like to upload her dance and cooking videos.
Trisha loves swimming, she is at level 6 at her school (Freestyle and backstroke, she can swim for up to 16 meters).
Trisha enjoys art and crafts; she can spend hours working on any art and craft project.
In some ways we are like any other family, however in some ways we are not. We try to be normal and happy for our kids and we understand our responsibility for our darling daughter Trisha and to our beautiful younger daughter Samika.
Since we found out about Trisha’s disorder, life has never been the same. We were devastated the moment we found out that she may not have many years to live. I considered leaving my job to stay at home with Trisha for the rest of her life. But my wife was very positive about finding a cure for Trisha and motivated me to get back on my feet and start looking for solutions. Since that day we have not looked back and continue to try and do everything we can for Trisha
Trisha needs support with daily activities and regular medical attention, including Physiotherapy and OT (Occupational Therapy). Due to this, Vandana (my wife) decided to quit her career and be a full-time mum so that she can focus on Trisha’s needs. Running a family of four with a single income has put us under some financial stress, however we are happy that we are able to provide Trisha with a comfortable life and hopefully find a cure for her disorder.
On the other hand Samika is growing up a bit puzzled about her sister’s behavior and cognitive abilities. She is very curious and asks us many questions, for which we do not always have an appropriate answer for. She looks up to her older sister for learning help and social skills however, she cannot comprehend why her older sister, who is 2 years ahead in school, is unable to help her with simple academic problems.
It is heart breaking to see Trisha not able to read/write and play in the same that her younger sister does.