Baby Brian Jaco Ras (Cao ZiYu 曹梓誉)
Donation protected
As administrators of the Baby Brian Fundraising account we are writing to let you know the latest news.
On Sunday 2nd July 2017 Brian’s family was informed that a suitable donor was available for the liver transplant. This was wonderful news for Brian who was almost 11 months old and weighed 8.65 kg. He was immediately admitted to hospital and underwent surgery on the same day. During 8 long hours the liver transplant team did an amazing job and successfully finished the important operation.
Brian was then transferred to the Intensive Care Unit where he was monitored very closely. He was immediately put on immunosuppressants (medication to help prevent rejection of the liver) which he will have to use for the rest of his life. Brian moved to the normal ward in the liver transplant center on the 7th July where he was well taken care of by the doctors, nurses and hospital staff.
During those few weeks in hospital Brian progressed well. He slowly started eating to the point where he was consuming more than he did before the operation. He began moving around very early on and was sitting unsupported and standing with support after a very short time. After only 23 days in hospital Brian and the family were given the good news that he could go home.He was discharged on the 25th July.
Brian has to continue to have regular visits to the hospital to be monitored by the liver transplant team. He also has to take daily,medication to help him recover.
From the past updates the following events occurred:
· It was decided to do the liver transplant in Beijing because this option provided access to an internationally recognized medical team and hospital transplant center and allowed the best support for Brian and the family.
· Jing Jing and Jaco decided it best to wait, if possible, for a DDLT (Deceased Donor Liver Transplant). Jing Jing was also identified as a possible match for LDLT (Live Donor Liver Transplant) if needed.
· In February 2017, when Brian was 6 months old and weighed 7.6 kgs, the liver specialist confirmed that hedefinitely needed a liver transplant. The liver transplant team monitored him closely until a donor organ was received
Expenses so far:
· Medical costs prior to liver transplant operation: = RMB 137,000
> Medications, supplements – RMB 55,000
> Hospital visits & tests – RMB 47,000
> Kasai operation – Nov '16 – RMB 35,000
· Liver transplant operation cost:
= RMB 300,000
Future monthly expenses for Brian:
· Medical costs post-liver transplant:
= RMB 7,000 per month
> Medication – life long and current – RMB 3,000
> Hospital visits & tests per month – RMB 4,000
· The costs are high and while the insurance company did eventually pay for the first surgery they have stated that they will not cover the cost of liver transplant or any related medical treatment including medication, hospital admissions or further operations
FINANCES
Total money raised since 4th December 2016: RMB 583,431
Total costs so far: RMB 437,000
----------------------------------------------------------------
Balance: RMB 146,431
Insurance reimbursement: RMB 35,000
----------------------------------------------------------------
Balance: RMB 181,431
Minimum money required per year: RMB 84,000
----------------------------------------------------------------
If no further complications occur the current balance will cover Brians medical costs for approximately 2 years.
----------------------------------------------------------------
Original Target: RMB 700,000
Shortfall: RMB 116,569
----------------------------------------------------------------
If we reach the target, and as long as he doesn’t require any further procedures, this will help with medication and the routine follow up hospital visits for Brian for the next 3 and a half years
Thank you everyone for opening your hearts and giving your kind and generous support to Brian and his family. They are all extremely grateful and feel very blessed. Your amazing response has taken away much of the worrying financial burden that would have caused them even more stress.
Brian is so much better after the operation. Without the wonderful medical team and hospital support it wouldn’t have been possible. Our sincere gratitude goes to the liver transplant team for their ongoing complete and total care and support for the family.
Our thanks also goes to all the medical personnel from other places who have willingly given their time, experience and reassurance.
Brian’s journey to better health is still in its early stages.
Fundraising to help cover his ongoing and future medical expenses will continue. We would like to reach our original target of 700,000 RMB (to date you have raised over 580,000 RMB).
Once we fulfill our goal the family plan to support official groups who are fundraising to help other children with Biliary Atresia whom require liver transplantation.
Once again thank you SO much for all of your help!!
Yours sincerely
The Baby Brian Fund Administrators
STORY SO FAR FROM BRIAN's (CAO ZIYU's 曹梓誉) PERSPECTIVE:
· I was born on 8th August 2016 in Beijing. Mommy (JingJing) is from China and Daddy (Jaco) from South Africa. Brian means power and kindness, Mommy and Daddy chose the name the day I was born.
· I looked healthy after 38 weeks inside Mommy’s tummy and weighed in at 3.2 kg and at height 53cm – so I didn’t expect what happened next!
· The doctors spoke to Mommy and Daddy before I left the hospital where I was born. They said I had Jaundice and didn’t know if I had a small gallbladder or none at all. I didn't even know what that was, my body and eyes just looked yellow. When I was 5 days old I spent the next 2 days under a blue light to try to help. I kept strong by drinking mommy’s milk every day and I was still happy.
· For anyone that doesn’t know about Jaundice, Mommy and Daddy found this video link from YouTube to help explain; so even I could understand:
https://www.youtube.com/watch?v=gIACp5js4MU
· Because I wasn’t getting better I went to different hospitals and saw lots of doctors who did many blood tests and other big investigations (there was one machine I think they call CT). No one could tell me what was wrong.
· The days passed and we went to other doctors to find out if an operation would help. When I was 68 days old I had to stay in the hospital again to do more tests. On 19th October 2016 when I was 72 days old I had my first surgery. The doctor didn’t know what was wrong with me until they opened me up and told Mommy and Daddy I have Biliary Atresia (BA)!!! The doctor said I have Type 3 which is the worst which meant I had to have an operation called Kasai Procedure in order to save my life.
· For anyone that doesn’t know about BA and the Kasai bypass procedure Mommy and Daddy found this video link from YouTube to explain more; so even I could understand:
https://m.youtube.com/watch?v=pyT95PVUINI
· I really don't like hospitals, but Mommy and Daddy found the best doctor to help me. Mommy, Grandmother and Daddy stayed with me in hospital for 15 days because I had a wound infection and fever. I couldn’t drink Mommy’s milk because Mommy worried too much and couldn’t make enough for me. Every day I had needles in my arm, head or leg to give me something that looked like water. I also couldn’t sleep well because I had 6 new, sick friends in my room and they were crying too much. Everyone was very tired but I tried to smile to stop Mommy crying so much. Daddy, Mommy, family and friends prayed a lot for me. Some people visited me, but I know Mommy and Daddy felt too sad and didn’t want everyone to see me like this.
· So now I have a big scar on the right side of my stomach from the surgery. In hospital the wound was white and yellow, but after only 39 nights it closed.
· The doctors did more tests and they told Mommy and Daddy I’m worse than before the surgery. I went to see a doctor at another hospital that has more experience. He told us to wait 14 nights and to use other medicine. I’m tired of medication, but I must keep strong. I now drink milk which has something special added to it 3 times a day. It tastes different and I always cry when I have to take it but I know it’s supposed to help me.
· I have been home since November the 1st 2016. I have had to go and see the doctor many times for follow up. It’s not easy to get in to see him. We have to go very early in the morning to make sure we don’t lose our place in the queue. The professor who cares for me now works in Beijing and is very experienced in taking care of children with liver problems.
· On the 6th of February 2017 the professor told Mommy and Daddy that I was going to have to have a liver transplant.
· I have been growing during the past few months. Every few weeks Mommy and Daddy take me to the hospital to do blood tests. Then I see the doctor who checks out my liver.
· I have been picking up weight and in May/June I was more than 8.5kg. I also regularly went to see the children’s doctor for injections (vaccines). Everyone is so friendly and helpful. Everyone has been so wonderful with their support, good messages and love for me, Mommy and Daddy. Finally Mommy and Daddy decided I should do the liver transplant in Beijing.
· On the morning of the 2nd July 2017 Mommy got a phone call from the hospital. Mommy and Daddy were very excited It’s Sunday and I’m going to hospital. Today feels like a big day for me and the rest of my life.
· The doctors put me in bed and I went with my family into a big room, which looked like an operating theatre I heard the news that today I will get a new liver and a new life! I am really excited but I’m also nervous. Luckily everyone is so helpful and kind. The doctors, nurses and team were operating on me for 8 hours and now it’s finished. Everyone worked so hard to help me. I got moved to a place called the ICU where the doctors and nurses said I will have to stay for a few days.
· After a few days and with support from Mommy, Daddy and Grandmother I moved to the main ward. Of the liver transplant centre Today is the 7th July, tomorrow I’m 11 months old. The medical team has been amazing and if all goes well the next stage will be to go home!
· Every day I am getting stronger and eating more. I have Mommy, Daddy and the family with me. Everyone is wearing masks to keep me safe. The medical team treats me very gently. I am so happy; I can soon go home if I continue to get stronger.
· Its day 23 after the operation, this morning the doctors told Mommy and Daddy that I can go home today. Today is the 25th July 2017, I’m going home!! Yippee!! In 2 weeks I will have my first birthday; what a wonderful birthday gift I have received!
· I will continue to see my wonderful medical team after the operation. I still have to take medication twice a day and this will be for the rest of my life to keep my liver safe, but I’m feeling so much better and happier.
Thank you so much everyone for your kind messages, support, thoughts and encouragement!
FACTS
· Brian's condition, after liver transplantation will require regular doctor visits, tests and medication for the rest of his life.
· The insurance will not cover the liver transplant or any medication, treatment or operations related to his liver disease.
· Your help and support has helped Brian and the family financially and emotionally get through the liver transplant and in future will help with any additional medical costs. Thank you so much!
On Sunday 2nd July 2017 Brian’s family was informed that a suitable donor was available for the liver transplant. This was wonderful news for Brian who was almost 11 months old and weighed 8.65 kg. He was immediately admitted to hospital and underwent surgery on the same day. During 8 long hours the liver transplant team did an amazing job and successfully finished the important operation.
Brian was then transferred to the Intensive Care Unit where he was monitored very closely. He was immediately put on immunosuppressants (medication to help prevent rejection of the liver) which he will have to use for the rest of his life. Brian moved to the normal ward in the liver transplant center on the 7th July where he was well taken care of by the doctors, nurses and hospital staff.
During those few weeks in hospital Brian progressed well. He slowly started eating to the point where he was consuming more than he did before the operation. He began moving around very early on and was sitting unsupported and standing with support after a very short time. After only 23 days in hospital Brian and the family were given the good news that he could go home.He was discharged on the 25th July.
Brian has to continue to have regular visits to the hospital to be monitored by the liver transplant team. He also has to take daily,medication to help him recover.
From the past updates the following events occurred:
· It was decided to do the liver transplant in Beijing because this option provided access to an internationally recognized medical team and hospital transplant center and allowed the best support for Brian and the family.
· Jing Jing and Jaco decided it best to wait, if possible, for a DDLT (Deceased Donor Liver Transplant). Jing Jing was also identified as a possible match for LDLT (Live Donor Liver Transplant) if needed.
· In February 2017, when Brian was 6 months old and weighed 7.6 kgs, the liver specialist confirmed that hedefinitely needed a liver transplant. The liver transplant team monitored him closely until a donor organ was received
Expenses so far:
· Medical costs prior to liver transplant operation: = RMB 137,000
> Medications, supplements – RMB 55,000
> Hospital visits & tests – RMB 47,000
> Kasai operation – Nov '16 – RMB 35,000
· Liver transplant operation cost:
= RMB 300,000
Future monthly expenses for Brian:
· Medical costs post-liver transplant:
= RMB 7,000 per month
> Medication – life long and current – RMB 3,000
> Hospital visits & tests per month – RMB 4,000
· The costs are high and while the insurance company did eventually pay for the first surgery they have stated that they will not cover the cost of liver transplant or any related medical treatment including medication, hospital admissions or further operations
FINANCES
Total money raised since 4th December 2016: RMB 583,431
Total costs so far: RMB 437,000
----------------------------------------------------------------
Balance: RMB 146,431
Insurance reimbursement: RMB 35,000
----------------------------------------------------------------
Balance: RMB 181,431
Minimum money required per year: RMB 84,000
----------------------------------------------------------------
If no further complications occur the current balance will cover Brians medical costs for approximately 2 years.
----------------------------------------------------------------
Original Target: RMB 700,000
Shortfall: RMB 116,569
----------------------------------------------------------------
If we reach the target, and as long as he doesn’t require any further procedures, this will help with medication and the routine follow up hospital visits for Brian for the next 3 and a half years
Thank you everyone for opening your hearts and giving your kind and generous support to Brian and his family. They are all extremely grateful and feel very blessed. Your amazing response has taken away much of the worrying financial burden that would have caused them even more stress.
Brian is so much better after the operation. Without the wonderful medical team and hospital support it wouldn’t have been possible. Our sincere gratitude goes to the liver transplant team for their ongoing complete and total care and support for the family.
Our thanks also goes to all the medical personnel from other places who have willingly given their time, experience and reassurance.
Brian’s journey to better health is still in its early stages.
Fundraising to help cover his ongoing and future medical expenses will continue. We would like to reach our original target of 700,000 RMB (to date you have raised over 580,000 RMB).
Once we fulfill our goal the family plan to support official groups who are fundraising to help other children with Biliary Atresia whom require liver transplantation.
Once again thank you SO much for all of your help!!
Yours sincerely
The Baby Brian Fund Administrators
STORY SO FAR FROM BRIAN's (CAO ZIYU's 曹梓誉) PERSPECTIVE:
· I was born on 8th August 2016 in Beijing. Mommy (JingJing) is from China and Daddy (Jaco) from South Africa. Brian means power and kindness, Mommy and Daddy chose the name the day I was born.
· I looked healthy after 38 weeks inside Mommy’s tummy and weighed in at 3.2 kg and at height 53cm – so I didn’t expect what happened next!
· The doctors spoke to Mommy and Daddy before I left the hospital where I was born. They said I had Jaundice and didn’t know if I had a small gallbladder or none at all. I didn't even know what that was, my body and eyes just looked yellow. When I was 5 days old I spent the next 2 days under a blue light to try to help. I kept strong by drinking mommy’s milk every day and I was still happy.
· For anyone that doesn’t know about Jaundice, Mommy and Daddy found this video link from YouTube to help explain; so even I could understand:
https://www.youtube.com/watch?v=gIACp5js4MU
· Because I wasn’t getting better I went to different hospitals and saw lots of doctors who did many blood tests and other big investigations (there was one machine I think they call CT). No one could tell me what was wrong.
· The days passed and we went to other doctors to find out if an operation would help. When I was 68 days old I had to stay in the hospital again to do more tests. On 19th October 2016 when I was 72 days old I had my first surgery. The doctor didn’t know what was wrong with me until they opened me up and told Mommy and Daddy I have Biliary Atresia (BA)!!! The doctor said I have Type 3 which is the worst which meant I had to have an operation called Kasai Procedure in order to save my life.
· For anyone that doesn’t know about BA and the Kasai bypass procedure Mommy and Daddy found this video link from YouTube to explain more; so even I could understand:
https://m.youtube.com/watch?v=pyT95PVUINI
· I really don't like hospitals, but Mommy and Daddy found the best doctor to help me. Mommy, Grandmother and Daddy stayed with me in hospital for 15 days because I had a wound infection and fever. I couldn’t drink Mommy’s milk because Mommy worried too much and couldn’t make enough for me. Every day I had needles in my arm, head or leg to give me something that looked like water. I also couldn’t sleep well because I had 6 new, sick friends in my room and they were crying too much. Everyone was very tired but I tried to smile to stop Mommy crying so much. Daddy, Mommy, family and friends prayed a lot for me. Some people visited me, but I know Mommy and Daddy felt too sad and didn’t want everyone to see me like this.
· So now I have a big scar on the right side of my stomach from the surgery. In hospital the wound was white and yellow, but after only 39 nights it closed.
· The doctors did more tests and they told Mommy and Daddy I’m worse than before the surgery. I went to see a doctor at another hospital that has more experience. He told us to wait 14 nights and to use other medicine. I’m tired of medication, but I must keep strong. I now drink milk which has something special added to it 3 times a day. It tastes different and I always cry when I have to take it but I know it’s supposed to help me.
· I have been home since November the 1st 2016. I have had to go and see the doctor many times for follow up. It’s not easy to get in to see him. We have to go very early in the morning to make sure we don’t lose our place in the queue. The professor who cares for me now works in Beijing and is very experienced in taking care of children with liver problems.
· On the 6th of February 2017 the professor told Mommy and Daddy that I was going to have to have a liver transplant.
· I have been growing during the past few months. Every few weeks Mommy and Daddy take me to the hospital to do blood tests. Then I see the doctor who checks out my liver.
· I have been picking up weight and in May/June I was more than 8.5kg. I also regularly went to see the children’s doctor for injections (vaccines). Everyone is so friendly and helpful. Everyone has been so wonderful with their support, good messages and love for me, Mommy and Daddy. Finally Mommy and Daddy decided I should do the liver transplant in Beijing.
· On the morning of the 2nd July 2017 Mommy got a phone call from the hospital. Mommy and Daddy were very excited It’s Sunday and I’m going to hospital. Today feels like a big day for me and the rest of my life.
· The doctors put me in bed and I went with my family into a big room, which looked like an operating theatre I heard the news that today I will get a new liver and a new life! I am really excited but I’m also nervous. Luckily everyone is so helpful and kind. The doctors, nurses and team were operating on me for 8 hours and now it’s finished. Everyone worked so hard to help me. I got moved to a place called the ICU where the doctors and nurses said I will have to stay for a few days.
· After a few days and with support from Mommy, Daddy and Grandmother I moved to the main ward. Of the liver transplant centre Today is the 7th July, tomorrow I’m 11 months old. The medical team has been amazing and if all goes well the next stage will be to go home!
· Every day I am getting stronger and eating more. I have Mommy, Daddy and the family with me. Everyone is wearing masks to keep me safe. The medical team treats me very gently. I am so happy; I can soon go home if I continue to get stronger.
· Its day 23 after the operation, this morning the doctors told Mommy and Daddy that I can go home today. Today is the 25th July 2017, I’m going home!! Yippee!! In 2 weeks I will have my first birthday; what a wonderful birthday gift I have received!
· I will continue to see my wonderful medical team after the operation. I still have to take medication twice a day and this will be for the rest of my life to keep my liver safe, but I’m feeling so much better and happier.
Thank you so much everyone for your kind messages, support, thoughts and encouragement!
FACTS
· Brian's condition, after liver transplantation will require regular doctor visits, tests and medication for the rest of his life.
· The insurance will not cover the liver transplant or any medication, treatment or operations related to his liver disease.
· Your help and support has helped Brian and the family financially and emotionally get through the liver transplant and in future will help with any additional medical costs. Thank you so much!
Organizer
Jaco Ras
Organizer
