Shariq’s story

Our wonder boy. Our son Shariq has always been a Superboy! He pushed his way into the world at only seven and a half months on 11 February 1993, and from then on has taken us on this roller coaster ride of ups and downs!

Shariq was joined by his brother Siddhanth a year and a half later. For the next few years we lived a life of family bliss, enjoying watching our beautiful boys grow up.

On one of our routine visits for immunisation, our paediatrician could sense something different about Shariq. He was very slightly delayed in his milestones, but we had put this down to his prematurity. The doctor insisted that we do a CT scan, despite normal ultrasounds. That’s when our world came crashing down. I remember thinking: ‘This doctor is crazy! He’s mixed Shariq’s scans with someone else’s.’ He was saying things like ‘Alexander disease’, ‘maximum life span – six years’, ‘loss of physical and mental faculties’, and so on. I screamed at him: ‘How can this be possible?’ Shariq was running around outside at the time, happy as a lark with not a single outward sign of abnormality.

Anyway, for a few months we lived with this heavy burden, expecting things to take a downturn at any time, until one happy day when we were told by another neurologist that things may not be so drastic for Shariq as previously described. Shariq had a very rare form of leukodystrophy, called MLC1, which was discovered by Dr Marjo van der Knaap. Patients with this condition showed milder symptoms of mental and physical regression and usually fared well up to their high school years.

With this hope in our heart, we decided to treat Shariq as normally as possible and give him the quality of life he deserved – whatever the sacrifices involved to us as a family. They say that ‘ignorance is bliss’, but now in hindsight I can say that the best thing that ever happened was finding out that Shariq had MLC1. This is simply because had we not known so early, our poor boy – being the fighter that he is – would have struggled to be ‘normal’ and cope in a competitive world. We as a family and community may have had unrealistic expectations and may have put unfair pressure on him to behave as a ‘normal’ child.

In the year 2000, we moved to Australia permanently and never looked back. Today Shariq is 14 years old. He is very proud to be a student of Trinity College in Perth. He is being mainstreamed, with the appropriate modifications to his syllabus. Next year he will switch to Senior Enterprise, which is a more vocationally orientated course. Shariq is well adjusted and well accepted in school. He is supported by the school, the hospital, his therapist and his family in his journey through life.

We as a family cannot imagine Shariq any other way than as he is. His love, selflessness, resilience and compassion for others help us put our own lives in perspective. In spite of a bleak prognosis, we like to take one day at a time and enjoy what we have rather than wait for what is predicted to happen.

Our son Shariq is a gift from above. We must have done something right in our lives to deserve a wonderful son and brother such as him.

In conclusion, I will say that God not only gives ‘special children’ to special families, but he also gives these families the strength and hope they need. We know our son Shariq has a special place in HIS heart, and we feel safe in the knowledge that our son has the best Guardian ever!

Giselle Sharma

Postscript

The story above was written in 2007. Today Shariq today is 17½ years old and as dashing as ever. He is in his final year at Trinity College. Shariq has excelled at his Senior Enterprise course and has become a cross country star. He will be representing WA at the State School Cross Country Meet in Brisbane this year as an AWD (Athlete With a Disability). Recently he attended his school’s Year 12 Ball and burnt the floor with his dancing!