Most of you might have read my story recently on the news about being ill-treated by my domestic helper that left a suction cap in my throat for about 12 hours, if not, here’s the story:
But most of you doesn’t know the true story behind my condition. My name is Miracle Chik, I’m 5 years old this year, and have been diagnosed with rare Spinal Muscular Atrophy type 1, which is a life-threatening neurological genetic disease with poor prognosis since 2012, and there’s no treatment in the world till now.
There’s a reason that my parents named me Miracle, despite my disabilities, I’ve survived the ordeal and been alive till today, with no hope and nothing to look forward to.
I wasn’t born in this way. At two months old, my upper limbs were still able to move, but as days gone by, my muscle became weaker and weaker after gone through two times operation, the remaining function was left for a few fingers' movement two years ago. As the disease's deteriorated, I fully lost all my limbs' movement.
I’m on ventilator and oxygen 24 hours a day, as I’ve developed severe respiratory failure, and unable to swallow water and food, and requires tube feeding, which I only can take milk which goes directly into my intestine, and regular suction for copious secretion.
I have normal brain function, and able to communicate with the only person, my Mother, and for my Father, he can’t seem to understand my expression as I can’t speak due to the tracheostomy tube which causes me to lose my voice.
My wonderful parents have been trying very hard to make me comfortable, and during my first four years of my life, due to frequent hospitalization, both my parents have been sleeping in the hospital to look after me, and especially for my Father, he still need to go to work the next day, life been hard on them.
I was beginning to lose hope and think there’s no miracle for me, until today. There’s a new medicine call SPINARAZA (Nusinersen) which had just been approved by FDA in America last year, this gene therapy is the treatment specific for SMA type 1 patient like me and this is the only treatment for SMA patient over the all of world. This is the hope for me.
My parents have requested neurologist from KK Hospital to help and liaise with the US pharmaceutical accompany for bringing the treatment into Singapore.
However, we have encountered the amazing treatment price which cost $750,000 for the first year, and subsequently $375,000 for the second year!
I know this is way beyond what my parents can afford, and so I’m appealing to all kind donors out there to help me and my parents to raise enough money for my treatment.
Any amount is good and this new medicine will actually help me, I WANT TO LIVE!
Thank you for your kindness for allowing me to LIVE.Miracle Chik