I Give It A Shot

Sana, Sana… they all call me

God hears me… I always say

Sana, Sana… they all feel me

God hears me… for I pray

Sana, Sana… they worry for me

God hears me… I am okay

For the Heavens know… everything will be all right

What do you do when you come out into this world at 41 weeks only to be sent directly to the ICU breathless, bruised, battered and blue with abrasions due to lack of water….. You tell yourself….I am not just any baby…I am Sana and I am prepared for the battle. Sana B did just that, she grew up to be a fighter.

The Williams Syndrome diagnosis came much later when Sana was 8 months old. Poonam her proactive mother, a remarkable lady who has made her daughter her life’s mission had unwavering faith and knew that the challenge was going to be colossal, as the spontaneous deletion of 26-28 genes on chromosome #7 at the time of conception, was not a matter to be taken lightly. The deletion can occur in either the egg or the sperm so nobody can pinpoint accurately at the cause or blame anyone in particular for. It was indeed the hands of God that sent Sana to this home where everyone held hands to lift each other and never brooded over the past but acted to resolve and emerge victorious. It is likely that in most families, the child with Williams Syndrome is the only one to have the elastin gene condition in his or her entire extended family. The ominous statistic of Sana being 1 in 10000 was not comforting but instead made Poonam all the more determined to fight all odds to prove that Sana would be different…not just different but exceptional.

Poonam’s crusade began as soon as Sana was born. At this point she was in the dark and many questions assailed her as she wondered what exactly was not right with her baby. Sana had difficulty swallowing and constantly cried as severe reflux issues robbed her of quality sleep.

Poonam battled endless nights of sleep deprivation as she had to sing rhymes for hours just to get Sana to sleep. Eating was no joy as Sana was not equipped with the ability to chew and thus had to be tube fed. Every mouthful that she took put a smile of relief on this anxious mum’s face. The support of the extended family gave Poonam the strength and the energy to do endless research as well as the opportunity to reach out to specialists both local and abroad.

The diagnosis when it finally came posed more questions for the family as Williams Syndrome was a rare genetic condition and research on it was still ongoing. As developmental milestones, posed greater hurdles for Sana and simple acts of crawling, rolling over, sitting and walking proved challenging, Poonam realised that early intervention would be the answer. She sought the advice and help of many different caregivers and physiotherapists; occupational therapists and speech therapists were assigned on a regular basis to help Sana and continue to do so.

The start of Sana’s school life was exacting to put it lightly. The simplest of tasks posed the greatest challenges - the school was huge and navigating the area in search of her classroom itself was a task.

Sana had trouble with basic selfcare skills, lacked social skills and could not adhere to the rules assigned by the establishment which were all considered a norm by the school administrators. It came as no surprise when the school counsellors suggested that as Sana would find it tough to keep up with her peers, a school for children with special needs would be a better choice.

Poonam waged her own wars with these unfriendly establishments that could not provide the inclusive environment that Sana needed to help her cope with her delay in global development. Sana too was very much on her own with no friends as nobody understood her predicament. The world of academia could do little for her and authorities suggested transferring her to a school for children with special needs. This riled Poonam to the core as she did not see any visible handicap in her child who exhibited so much potential. She endeavoured to look for a school that had an inclusive programme that catered to other multiple intelligences like the performing arts besides just focusing on passing exams and scoring in core subjects all of which needed reading, writing and comprehending. These were her greatest banes. Poonam knew her daughter would reach great heights if given the right opportunity in appropriate fields.

At the same time, Sana had other bigger issues to tackle. She had to undergo eye, ear and dental surgeries. She has a hole in the heart and suffers from heart murmur but doctors are positive that everything is under control. She has a fear of flying and hill areas upset her and this leads to anxiety but our fighter remains resilient. Though her fine motor skills were weak and holding a pencil was a chore, she broke all boundaries and started learning to play the piano and drums. It was not smooth sailing but after years of practice, patience and persistence, she has now advanced to creating her own melodies. Sana’s talents did not stop there as her singing prowess has earned her accolades. She started taking this passion seriously and is taking regular lessons in classical singing. Another feather in her cap is that she has mustered the confidence to perform on stage and has also delved in public speaking. Recently, while on a holiday cruise with the family, she took part in a Karaoke Superstar competition where she, despite being the youngest participant beat more able contestants to win the runners-up Golden trophy. She not only earned prizes but praises as well.

Sana’s virtuosity extends to dancing and that too she executes with a passion and her ability to strive higher led her to choreograph a performance for a big group of family members on the occasion of a family wedding. She is a born entertainer and never makes excuses for herself. She rises above her debilities and puts many of us to shame. She is into cooking now and bakes cupcakes besides concocting her version of chicken wraps. Her lack of eye, hand coordination and poor muscle tone have not deterred her from taking part in sports. The lack of gross motor skills and upper body strength were waived aside by Sana’s true grit and will-power which she believes are all that one needs to win the day. She has improved vastly in badminton, table tennis, swimming and snorkelling. Poonam has found an instructor in her daughter who never ceases to amaze her. The energy this child puts into all that she aspires to achieve is commendable. Her “I have got it” policy has helped her overcome all her fears and doubts. She attempted parasailing, a mean feat for even the toughest of us, but her adventurous streak saw her enjoying the experience immensely. Sana’s phobia of heights has become a thing of the past. Having a daughter as daring as Sana, has seen Poonam going on roller coaster rides thus overcoming her own fears.

What started off as daunting tasks, as a result of Williams syndrome such as drawing, tying shoe laces and writing independently, now do not intimidate Sana. She pretty much handles herself with minimal assistance. It has not been easy for Poonam too as she has been the driving force to propel this progress and achievement. Poonam was apprehensive to have a second child as she wondered if the new addition would have enough of her time and attention. With the support of her husband and Sana’s innate ability to ‘never say die’ Poonam is on to creating another genius in Shaurya, her son who has carved a name for himself in table tennis by representing the state.

The most charming trait that this beautiful child has is to share her love and kindred spirit with all those who are lucky enough to meet her. She is receptive to mood changes and her empathetic self can reach out to the loneliest souls. Poonam relates how on a holiday at Gold Coast, they were out on a shopping spree when they chanced upon a salesperson who appeared rather pensive. Whilst everyone would have attributed it to job stress, Sana’s discerning self, saw beyond the lady’s quiet demeanour and sensed her sadness within. Sana’s emotional intelligence moved her to ask, “Is everything all right with you?” The lady despite her initial surprise, could not hold back her tears and confessed that she was missing her mother who had passed on recently. Sana without any hesitation asked if she could give her a hug and did just that. She encompassed the lady with the love and warmth that the lady was clearly missing. The hug reminded the lady of her mother and the solace she received from this child who was a total stranger overwhelmed her. When they revisited the same shop, Sana insisted that they meet her again and of course the lady never forgot the perceptive girl who had brightened her day with just a hug. That’s the magnanimity of Sana who reaches out to anyone who needs a smile.

Now 14, Sana’s social circle has expanded to include a small group of friends who understand her and provide the support she needs from time to time. Now that Sana is growing to be more independent and has greater knowledge of her condition, she has decided to open up and share her experiences so that people would better understand Williams Syndrome which is also known as the Happy Syndrome as people with this condition often have outgoing, friendly personalities and tend to be sociable. A better advocate than Sana cannot be found to promote understanding of this condition as she independently pioneered a presentation in front of her whole year group. True to her nature of leaving no stones unturned her event was complete with her cupcakes and all. She made photobooks and had a question-answer session to make it not only meaningful but educational as well. Sana was equipped with answers and made her family beam with pride as she surpassed all initial apprehension and doubts to announce to the world that she had arrived safely though her journey had begun tumultuously.

The family is currently looking forward to the events lined up for Sana in the coming months and to kickstart it, July has been declared the Williams Syndrome month. A peek into the event sees a programme named Walk for Williams and Art Nights and if you look closely you will see the main character of this tale shining her bright light and making her presence felt as the excitement will drive Sana’s adrenaline to do the unimaginable.

‘Sana’ in Spanish means to heal, recover and improve and it is clear to see that when the good Lord was creating our Sana, He made no mistake. Sana has healed, recovered and continues to improve not stopping just at herself but inspiring all and sundry that it is easy to simply blame everything on the unfair Hand of Fate and resign ourselves to merely existing but Life is a precious gift that must be cherished and it is up to us to live it well. Although Sana had help along the way, it was sheer hard work and belief in herself that saw her through the many hurdles that came her way. Sana learned very early that life is like the igniting of a match – short and beautiful so what is important is that you burn brightly.

Sana, Sana… they all call me

Sana, Sana… they all feel me

Sana, Sana… they worry for me

God hears me… I always say

God hears me… for I pray

God hears me… I am okay

For the Heavens know… everything will be all right