I haven’t updated my blog in such a long time cos I’ve been sooo busy running my businesses and doing so many different things. But well, here I am again to update you guys on what I’ve been doing on this spectacular journey that I am undertaking.
Yes you read right. My heart broke. It really did. Well. Not too long ago one of my mentors, Sean took me out to dinner. That eventful night he told me of a cause he was fighting for. He talked to me at length about children who suffer from very rare diseases who CANNOT survive without being constantly taken care of.
He introduced me to this beautiful baby, Chloe. She suffers from this very rare disease POMPE which really makes living very difficult for her. She has an enzyme deficiency and she has to go for enzyme replacement every 2 weeks just to survive. Medical costs go as much as $300k/year. This has completely made the family’s finances run dry. But they fight all the way just for their baby. The parents of chloe started up a group for other parents who have children like themselves just to support them.
My heart burned. I mean. They have enough problems of their own to handle. Who were these saints living in Singapore who had a heart to give hope to other parents as well when hope was already so bleak to them? Dang I had to meet this people!
LO and behold! Opportunities come to those who seek it! It is soooo true. I truly believe opportunities just come to me in bucket loads. I’m an opportunity magnet! So I had the greatest privilege to go interview the parents of these children with rare disorders. I represented YOUNGSPEAKER which is a social enterprise where young people speak for social good.
I was feeling very jittery when I entered their house. The parents were cheery and they welcomed us with open arms. As we conversed I really got to understand them. They divulged on the problems they faced financially and emotionally. The cost incurred in having to raise a child who needs to go to the hospital every other week is ridiculously high. Their situations were such one parent HAD to leave their job to take care of the child. And also in many cases, they had other healthy children to look after as well.
Well I just cannot relay their words well enough through this post. But let me recount to you this ONE scene which I will never ever forget for the rest of my life.
We were in the house of baby Danielle. Danielle suffers from spinal muscular atrophy. She is literally bed ridden. She cannot move on her own accord. She cannot even move her neck. She cannot swallow. I don’t think she can even breathe without assistance. I entered her room which was fully air conditioned with oxygen ventilators and all by her bed side. She had these suspenders from above which suspended her arms and legs in mid air. When I saw her, I saw a beautiful child but I also got very quiet.
I then spoke to her daddy in that room and I asked him “what keeps you going?” He then said “Danielle is a very talented girl and I love her very much. Every day I cannot wait to rush back from work just to hear her breathe” my heart just stopped at that sentence man. Daddy had so much joy just in seeing the suspenders move as Danielle attempted to wriggle her legs. His greatest joy was in hearing his baby breathe!!!!
oh, it just made me realize how I cared so little about the privileges I had around me. I just have to pause to give thanks to the lord who gave me this precious gift of life to LIVE in a healthy body. Thank you God!!!
as I let him talk about his baby I felt tears welling up and my head started throbbing. But then came the worst part. I had to take my leave! Man, I swear this was truly the hardest thing for me. As I bid farewell I had thoughts raging in me!! All I could say to him was “take care”. Damnn. I wonder. How many people would have come to his place to say hi and just take their leave as they carried on with their ordinary lives? I was going to be just like everybody else. He ultimately had to go through the ordeal with his own family. How unfair. I hated myself for it. I could donate a few thousands. But really. How sustainable is that? And if I wanted to help this family. What about the others? What about chloe? Good lord. My head was burning! My heart was in pieces.
I need to find a way to provide these families with a source of passive income to provide for them financially. But how? Im still searching for ideas! All I can do now is to raise awareness for the Rare Disorders Society. Please like their page on Facebook. (Rare Disorders Society) And also do look up Save Chloe on fb as well.
I have a vision of raising $10 000 to help support the families of RDSS! I plan to raise the money to support the electricity and power bills of the family which can be veryy costly! You can contribute just $80 to help pay for 1 month of bills. Click HERE to support this cause. I hope this post reaches out to many people out there. Together as one I truly believe we can make a difference.
Here is the video interview I did with them. Do watch and share the video too!
I for one will appreciate everything I have every single day.