Hi all. My name is Raphael. I was born at 27 weeks (about 6 months) premature with weight of 860 grams together with my twin brother, Gabriel, at 20 May 2016. Unfortunately, on 8 July 2016, my brother suffered multiple organ failure, and had since gone to heaven.
After the loss of my brother, I continue my neo natal intensive care unit (NICU) journey by myself for 217 days (7 months), then I was only allowed to go home and able to celebrate Christmas with my parent.
Gabriel (top image) and Raphael (bottom image) were born at 27 weeks
We arrived at the world so much earlier not because we wanted to. It all started with this horrible syndrome called Twin to Twin Transfusion Syndrome that affect us when we are 25 weeks old.
Because of this syndrome, there were few surgeries being done, thus making our water bags more fragile. When my parents were told that this syndrome is only happen by chance and there is no way to minimize the risk, they were scared and doing their best to keep their minds with positive thoughts so we can be saved.
Our first family picture taken by the nurse
Raphael is finally home after 217days stay at NICU
As a result of extreme prematurity, I am having profound hearing loss that will require Cochlear Implant. The hearing test had been conducted 3 times and it is showing that I only can hear very minimum sounds. The ENT specialists inform my parents that I will be sensing my environment with total silence.
This Cochlear Implant that I need will involve huge hospital bill. Since it is affecting both of my ears, it will cost about S$ 54,000 not including surgery and hospitalization. This Cochlear Implant will be conducted around May to Aug 2017 when my body is bigger and strong enough for the surgery. Currently I am using hearing aid to amplify the surrounding sounds temporary. The hearing aid itself will cost about S$ 1,500.00 after government subsidy. Additional extensive therapy will be required as well after the implant in order to make me able to listen and hear properly. ENT team is not able to provide cost estimation for the therapy needed, since the duration of therapy will depends on how fast I can catch up.
Due to long term stay and extensive support needed for me at the NICU, my overall developmental also delayed. Hence team of therapists and doctors are helping me to catch up with my peer. These on-going outpatients are also contributing about S$ 1,400.00 per month.
Raphael first follow up after going home
My parents need to take care of me 24/7, since I am also having holding breath spell – which means I forgot to breathe. So every time it occurs, my parents need to stimulate by tapping or gently swing and I can breathe again. I am also not allowed to go outside due to my poor immune system. My mother is unable to work and leaving my father as the only single source of income. The situation is quite financially challenging for us.
Having on-going treatment cost and future Cochlear Implant, I will need your support financially and prayer for our family. I want to hear the sounds from my surrounding and especially my parent voices. Appreciate if you can help to share my fundraising page at your social media to the kind donors out there.
Previous news coverage on our family