Everyone is special in this world

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I managed to catch up with my good friend Sharon Soo and her daughter Rachel briefly. Rachel is just like any other young adults. She is witty, goes on road trips, spends time online, catches up on the latest movies and reading her favorite novels. However, what sets her apart from the rest is the rare disease she lives called Morquio Syndrome which is also known as MPS IVA. In short, she is born with one missing enzyme. This condition affected her growth progressively, disabling her physically but not intellectually.

Rachel is unable to walk or stand for long but she is determined to keep herself mobile as opposed to relying on a wheelchair. As long as she is mobile, she is exercising her muscles. She is unable to climb stairs or lift heavy items (not more than 2kg). Her fingers do not have the strength to hold a scissor to cut paper or press on a nail clipper.

Rachel is bubbly and hopeful. She can hold discussion with people from all walks of life. Her laughter is contagious and she is always willing to lend a listening ear. Rachel graduated with a Law Degree from University of Hertfordshire, UK in 2011.

Yes, we spoke on many things. It was so refreshing for a “nerd” like me who spend so much time behind a computer tracking price action and writing inflammatory analyses for investors, to talk to someone who is so very special like Rachel. Our conversation was both educational and inspirational that should encourage everyone and his uncle in this topsy turvy world. You just cannot make this story up which has been modified to suit this limited space.

YH: What is your main goal in life?

Rachel: Born with this rare condition, I strived to lead as purposeful and independent as possible. As opposed to looking at the thorns in the rose bush, I choose to smell the roses. 

YH: Who is your biggest role model in your life? Please tell us more about the person.
  
Rachel: I am thankful to have my mother to walk this life together with me. She raised me up single handedly. Through thick and thin, winding and steep she is always there.  Her love is unconditional but I am not spoiled. She accepted me as her gift and nurtured me to stand up for myself. My acceptance on my condition has a lot to do with how I am coached from young. Quoting mom: “No one can look down on you unless you allow them. Do not give anyone this right!”

YH: What is your advice for some people on dealing with challenges in life?
  
Rachel: Life is never a bed of roses. It is only through challenges we get transformed. Try viewing challenges as an opportunity to do things differently. Change is about the only thing that is constant in life. The choice is yours. My challenges are countless but I do not dwell on it. 

What good would it do to me except to pull me down. Look for someone whom you can talk to and release it.  At the end of the day, it is we ourselves who need to make an informed decision and move on. Life to me is measured by its quality and not the length of my journey. As mom puts it, we are not immortal and that everyone will die just that we do not know when. 

YH: How do you balance your studies/career and personal life?
  
Rachel: I mingle well with people from all walks of life and have many great friends. I am not a dull “Jane” and those who know me nick name me “chilli padi”. You can hear my laughter before you can locate me. Yeap, standing at 92cm, I consider myself very down to earth. I studied just as hard as I enjoyed life. Happy or sad, the clock still ticks and I choose to smile. For now, I enjoy sharing my journey with the hope that it can inspire and motivate others not to abuse their life.

YH: Thanks Rachel and hope we can catch up for coffee again in the future.

Sharon: This eventful journey of Rachel and me has enabled us to see the world in many colors. We are blessed with the great and learned from the dull but it does not deter us from our aimed to lead a purposeful life.

As we parted company, she left me on an emotional note that truly touched my heart and I believe the hearts of many people out there.

“My challenges are aplenty and mom solely bear, cope and provided solutions to mitigate if not overcome any hurdles we encountered for the past 27 years. She is a career woman, takes care of the household, my challenges, provided me with a happy and cozy home. I am a Bionic Woman (with all the screws and nuts in my body) and mom, she is my Super Woman. Honestly, I do wonder where mom gets her emotional strength, courage and still stay positive towards family and friends. She is my pillar of strength, driving force and my greatest role model.” 

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