We are blessed parents of two special children Shaun (13 Years) is a non-vocal, hyperactive boy with autistic features.
Sharon (11 years) is diagnosed with debilitating SMA.
Taking care of their little things keeps us engaged always. But their smiles give us strength and encouragement throughout the day to move on.
Sharon has her likes, just like any other child of her age. She wants to play, run, and see the world just like other kids. She goes to a regular school. Alongside regular physio, we try to get her involved in more of physical activities. Seeing her interest in games and sports we introduced chess to her. Soon, we introduced her to professional chess in due course. It is God’s grace that her interest in the game developed and now she keeps herself engaged with the game and its tournaments. Practically, she does not get time to think about her physical shortcomings at all.
She has won many awards at District and State level tournaments. She aims to become a chess champion and looks at chess as her professional career. Winning and losing is an integral part of any game or sport. This regular win/lose trend has set her mind to look at life with the same lookout – it is called “sportsman spirit”. When God puts us in difficult situations, he places angels around us to help, guide, and support us.
At school, her friends play with her and they help her a lot. The school principal, teachers, non-teaching staff, and the management alike have always been good and helpful to her always. They do not miss any opportunity to encourage and motivate her.
Everywhere we go, we get one or the other advice on treatment, and undoubtedly, we have tried most of them, if not all. Obviously without much of a success.
Life on a wheelchair is not easy. But she has learnt to look at things as they are. She wears a constant smile always and says “I have learned to be happy. As is, where is”. Prayers of many well-wishers are our strength. She has strong faith and knows the power of prayers. We know for sure that prayer is the reason for hersmile and Strength of our Hope
As the Bible says, “when faithfulness springs from earth, the righteous lord will look down from heaven”. SMA being a rare disease does not make a particularly good vote-bank. That is why people in power do not show much of an interest in investing time for it, or funding for research.
With the disease being rare, the pharmaceutical companies do not see a massive market for it and do not consider it worth enough to invest in research activities.
smile and Strength of our Hope As the Bible says, “when faithfulness springs from earth, the righteous lord will look down from heaven”. SMA being a rare disease does not make a particularly good vote-bank. That is why people in power do not show much of an interest in investing time for it, or funding for research.
With the disease being rare, the pharmaceutical companies do not see a massive market for it and do not consider it worth enough to invest in research activities.aThese children are endowed with impeccable Intelligence. They are the likes of Stephen Hawkins, raring to come out of the shell. These children would definitely change the future of this world.
If governments of various countries come together and funded this research activity, I am sure that very affordable treatment for SMA (and other muscular disorders) is just around the corner.
There is something that is more worth than votes or money – it is a life.