Written by Xin Er’s mother
On 19 February 2010, we embraced the arrival of a new member into our family. This new addition, Xin Er, we thought, was the best gift and greatest happiness that God had bestowed upon us.
Sadly, on 1 September 2010, Xin Er was admitted to hospital for bronchitis. On the second day of hospitalization, doctors discovered irregularities in her heart rate. She was then transferred to the Intensice Care Unit (ICU) after the medical staff administered three rounds of emergency resuscitation. She experienced breathing difficulties and had to be assisted by an incubator. The doctors also broke the news that our daughter had been diagnosed with a rare genetic disorder called Pompe Disease and warned us to be mentally prepared for the worst. Even if she survived this ordeal, doctors informed that, statistically, patients with this disorder would not live beyond their first birthday! Our world crumpled that very moment.
Despite all the negativity that surrounded us, like most parents in similar situations, we were in a state of denial. We were hopeful and strongly believed in our daughter, the mighty warrior, that she would be able to pull through this. Little Xin Er heard our cries, felt our confidence and hopes in her. She ‘grit her teeth’, braved the storm and conquered the war. After a month of battling with the symptoms of the disease, our angel was finally discharged from the hospital on 2 October. Thereafter, Xin Er had been conscientiously going for her fortnightly Enzyme Replacement Treatment (ERT), which was a lifetime treatment. …. Every journey to the hospital was always filled with fear and anxiety. We feared that Xin Er might get choked by her own secretion along the way, though we always had an oxygen canister and other necessary medical equipment in the car. We felt like we were traveling in an ambulance each time. How many could really comprehend and empathize with our situation and feeling?
It pained us, as parents, to see our precious little angel, having to suffer the pain of pricking needles regularly and the dreaded symptoms of the disease. She was such a cheerful and active baby. Nonetheless, Xin Er never faltered. She fought hard and brave. We drew strength and inspiration from her. She taught us the value of life. While her life expectancy remained an unknown to all of us, we believe in the quality of life and treasuring every moment we spent with one another. Even a minute of precious time together, it could last a lifetime!
Xin Er, we love you and we will never let go. You will never walk alone!
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Xin Er went home to be with God on 7th August 2011. Her smile will never be forgotten by everyone who knew her.
%20after%20the%20medical%20staff%20administered%20three%20rounds%20of%20emergency%20resuscitation.%20She%20experienced%20breathing%20difficulties%20and%20had%20to%20be%20assisted%20by%20an%20incubator.%20The%20doctors%20also%20broke%20the%20news%20that%20our%20daughter%20had%20been%20diagnosed%20with%20a%20rare%20genetic%20disorder%20called%20Pompe%20Disease%20and%20warned%20us%20to%20be%20mentally%20prepared%20for%20the%20worst.%20Even%20if%20she%20survived%20this%20ordeal,%20doctors%20informed%20that,%20statistically,%20patients%20with%20this%20disorder%20would%20not%20live%20beyond%20their%20first%20birthday!%20Our%20world%20crumpled%20that%20very%20moment./pp%20style=color:%20#989898;Despite%20all%20the%20negativity%20that%20surrounded%20us,%20like%20most%20parents%20in%20similar%20situations,%20we%20were%20in%20a%20state%20of%20denial.%20We%20were%20hopeful%20and%20strongly%20believed%20in%20our%20daughter,%20the%20mighty%20warrior,%20that%20she%20would%20be%20able%20to%20pull%20through%20this.%20Little%20Xin%20Er%20heard%20our%20cries,%20felt%20our%20confidence%20and%20hopes%20in%20her.%20She%20'grit%20her%20teeth',%20braved%20the%20storm%20and%20conquered%20the%20war.%20After%20a%20month%20of%20battling%20with%20the%20symptoms%20of%20the%20disease,%20our%20angel%20was%20finally%20discharged%20from%20the%20hospital%20on%202%20October.%20Thereafter,%20Xin%20Er%20had%20been%20conscientiously%20going%20for%20her%20fortnightly%20Enzyme%20Replacement%20Treatment%20(ERT),%20which%20was%20a%20lifetime%20treatment.%20....%20Every%20journey%20to%20the%20hospital%20was%20always%20filled%20with%20fear%20and%20anxiety.%20We%20feared%20that%20Xin%20Er%20might%20get%20choked%20by%20her%20own%20secretion%20along%20the%20way,%20though%20we%20always%20had%20an%20oxygen%20canister%20and%20other%20necessary%20medical%20equipment%20in%20the%20car.%20We%20felt%20like%20we%20were%20traveling%20in%20an%20ambulance%20each%20time.%20How%20many%20could%20really%20comprehend%20and%20empathize%20with%20our%20situation%20and%20feeling?/pp%20style=color:%20#989898;It%20pained%20us,%20as%20parents,%20to%20see%20our%20precious%20little%20angel,%20having%20to%20suffer%20the%20pain%20of%20pricking%20needles%20regularly%20and%20the%20dreaded%20symptoms%20of%20the%20disease.%20She%20was%20such%20a%20cheerful%20and%20active%20baby.%20Nonetheless,%20Xin%20Er%20never%20faltered.%20She%20fought%20hard%20and%20brave.%20We%20drew%20strength%20and%20inspiration%20from%20her.%20She%20taught%20us%20the%20value%20of%20life.%20While%20her%20life%20expectancy%20remained%20an%20unknown%20to%20all%20of%20us,%20we%20believe%20in%20the%20quality%20of%20life%20and%20treasuring%20every%20moment%20we%20spent%20with%20one%20another.%20Even%20a%20minute%20of%20precious%20time%20together,%20it%20could%20last%20a%20lifetime!/pp%20style=color:%20#989898;Xin%20Er,%20we%20love%20you%20and%20we%20will%20never%20let%20go.%20You%20will%20never%20walk%20alone!/pp%20style=color:%20#989898;****************************************************************************/pp%20style=color:%20#989898;Xin%20Er%20went%20home%20to%20be%20with%20God%20on%207th%20August%202011.%20Her%20smile%20will%20never%20be%20forgotten%20by%20everyone%20who%20knew%20her./p ){kind=link}