Help Sarah and Lee care for their son Lewis
Donation protected
Some may find this an unbelievable story, but I can attest to this being 150% a true and concise account!
The Short Version
*These parents lost a little girl after a 9 month wait for a heart transplant due to cardiomyopathy
*The condition she had was genetic but her little brother had already been born
*He also had the condition- but is medicated to control it-but how long it will be controlled.... Who knows?
*The parents underwent IVF to remove the gene- they were told it was 99% a sure thing.
*They had a little girl- all clear!
*The had another little boy-also all clear….until he too developed cardiomyopathy! His life now hangs in the balance, and while he endures ongoing lifesaving treatment- there is no end in sight and will stay in hospital indefinitely.
*Dr’s are at a loss to explain the condition as they now say they don’t think the original diagnosis was the correct one. So their "healthy" little girl also has to be watched for problems.
* These parents need help…
The Long Version
My niece Sarah and her husband Lee Gambin are the strongest parents I have ever met.
All they ever wanted to be, were parents. They met, fell in love and started their family with a beautiful baby girl called Mayah. She was born healthy, but "irritable". Sarah took her to the Dr many times until at 4 months old on Valentines Day 2014, she was ordered to the Royal Children’s Hospital in Melbourne. Very quickly, Mayah was diagnosed with Dilated Cardiomyopathy and was swiftly put onto a mechanical heart machine that kept her alive and growing for the next 9 months. She could not leave the hospital in all of this time. There were many, many speed bumps along the way but finally she received a heart later in 2014. She recovered very slowly but, finally was able to go home. Five months later, Mayah went into rejection after not being able to absorb one of her anti-rejection medications, and 5 weeks later passed away. It was an extremely traumatic time for this young couple who in the meantime, had had another child a month before Mayah had the transplant, and where the Dr’s had told her parents that it was a genetic problem. Sarah was at that time told that she also had Cardiomyopathy and was put on medication for the rest of her life.
Mayah's little brother Charlie was tested and it was found that he also had the genetic makeup that was going to cause the same type of problems. The Dr’s worked rapidly to put him on medication that had never been given to a child before and were not able to give any assurances that this would work. Fortunately, it did, but he must stay on this medication that he has twice a day, for the rest of his life. They also could not give any assurances that the medication would keep working and that one day, he too would need a transplant.
Sarah and Lee sought help through IVF to be able to have a child that would hopefully be healthy. The Dr’s had told them that it was 99% effective in removing the gene that was “causing all the problems”. They underwent the very costly procedure (of which they spent most of their house deposit) to ensure they could have a well child. Their next daughter, Everly, was born and to all tests, passed with flying colours! Success!
Sarah and Lee still had embryo’s left over, so as they had had such success, and Sarah’s obstetrician said that she could only have one more pregnancy due to her own health, they decided to have another baby. Their son Lewis was born right in the middle of the Melbourne Covid lockdown which came with it’s own problems. Both Sarah and Charlie are considered “high risk” for contracting Covid so their lockdown was extreme. Lewis was born and the medical advice was that he didn’t need to have all the tests because of the success of his sister. The Dr’s said that this was the evidence that they needed to ensure that he was healthy.
Six months later, Lewis started to have the same irritability that Mayah had and started to show similar symptoms. Sarah demanded that he have some tests. The news came back very quickly that he also had Dilated Cardiomyopathy and would need intervention. This was devastating news!
Sarah and Lee were in a state of shock. They had done all the right things, they had followed all of the medical advice, they had made very conservative decisions and yet here was ANOTHER child that had this problem. When they sought answers from the Dr’s, they were told that there had started to be some doubts about the genetics that were responsible for this problem AFTER Everly was born….but these doubts were never conveyed to Sarah and Lee. If they had been, they would never have gone ahead with another pregnancy for fear that this could happen again.
A full genomic sequencing has been done on Lewis and it was confirmed that he DOESN’T have the same cardiomyopathy genes that his siblings have, which means the Dr’s are now at a loss in knowing why this has happened. They have checked genetic databases all around the world and there are no other people like these children to be found anywhere. This means that little Everly is now under suspicion as they cannot tell Sarah and Lee if she will begin to have problems. She is just going to have to be watched closely.
Now, Lewis has also spent a few weeks in ICU and has endured operations and treatment to keep him alive. This will be another indefinite time in hospital. Sarah and Lee spend alternating nights each in the hospital with him so that he has one of them with him at all times. So, this family now begins another long, terrifying journey, with no guarantees of a favourable outcome. Lee has had to take leave from his job just to help look after Lewis and juggle the other children. The family have been fighting Centrelink and their bureaucratic nightmare on top of this living nightmare, just to get some funds to help with their daily car parking and bills for the hospital while trying to keep their home afloat.
This isn't just a story, this is a real, living traumatic nightmare that is unfolding daily. The bad luck this couple have endured would have broken any of us. Yet they remain united in their love for each other, their children and the desperate hope of having a family all under the same roof one day.
Please help them if you can…these guys just need a break.
The Short Version
*These parents lost a little girl after a 9 month wait for a heart transplant due to cardiomyopathy
*The condition she had was genetic but her little brother had already been born
*He also had the condition- but is medicated to control it-but how long it will be controlled.... Who knows?
*The parents underwent IVF to remove the gene- they were told it was 99% a sure thing.
*They had a little girl- all clear!
*The had another little boy-also all clear….until he too developed cardiomyopathy! His life now hangs in the balance, and while he endures ongoing lifesaving treatment- there is no end in sight and will stay in hospital indefinitely.
*Dr’s are at a loss to explain the condition as they now say they don’t think the original diagnosis was the correct one. So their "healthy" little girl also has to be watched for problems.
* These parents need help…
The Long Version
My niece Sarah and her husband Lee Gambin are the strongest parents I have ever met.
All they ever wanted to be, were parents. They met, fell in love and started their family with a beautiful baby girl called Mayah. She was born healthy, but "irritable". Sarah took her to the Dr many times until at 4 months old on Valentines Day 2014, she was ordered to the Royal Children’s Hospital in Melbourne. Very quickly, Mayah was diagnosed with Dilated Cardiomyopathy and was swiftly put onto a mechanical heart machine that kept her alive and growing for the next 9 months. She could not leave the hospital in all of this time. There were many, many speed bumps along the way but finally she received a heart later in 2014. She recovered very slowly but, finally was able to go home. Five months later, Mayah went into rejection after not being able to absorb one of her anti-rejection medications, and 5 weeks later passed away. It was an extremely traumatic time for this young couple who in the meantime, had had another child a month before Mayah had the transplant, and where the Dr’s had told her parents that it was a genetic problem. Sarah was at that time told that she also had Cardiomyopathy and was put on medication for the rest of her life.
Mayah's little brother Charlie was tested and it was found that he also had the genetic makeup that was going to cause the same type of problems. The Dr’s worked rapidly to put him on medication that had never been given to a child before and were not able to give any assurances that this would work. Fortunately, it did, but he must stay on this medication that he has twice a day, for the rest of his life. They also could not give any assurances that the medication would keep working and that one day, he too would need a transplant.
Sarah and Lee sought help through IVF to be able to have a child that would hopefully be healthy. The Dr’s had told them that it was 99% effective in removing the gene that was “causing all the problems”. They underwent the very costly procedure (of which they spent most of their house deposit) to ensure they could have a well child. Their next daughter, Everly, was born and to all tests, passed with flying colours! Success!
Sarah and Lee still had embryo’s left over, so as they had had such success, and Sarah’s obstetrician said that she could only have one more pregnancy due to her own health, they decided to have another baby. Their son Lewis was born right in the middle of the Melbourne Covid lockdown which came with it’s own problems. Both Sarah and Charlie are considered “high risk” for contracting Covid so their lockdown was extreme. Lewis was born and the medical advice was that he didn’t need to have all the tests because of the success of his sister. The Dr’s said that this was the evidence that they needed to ensure that he was healthy.
Six months later, Lewis started to have the same irritability that Mayah had and started to show similar symptoms. Sarah demanded that he have some tests. The news came back very quickly that he also had Dilated Cardiomyopathy and would need intervention. This was devastating news!
Sarah and Lee were in a state of shock. They had done all the right things, they had followed all of the medical advice, they had made very conservative decisions and yet here was ANOTHER child that had this problem. When they sought answers from the Dr’s, they were told that there had started to be some doubts about the genetics that were responsible for this problem AFTER Everly was born….but these doubts were never conveyed to Sarah and Lee. If they had been, they would never have gone ahead with another pregnancy for fear that this could happen again.
A full genomic sequencing has been done on Lewis and it was confirmed that he DOESN’T have the same cardiomyopathy genes that his siblings have, which means the Dr’s are now at a loss in knowing why this has happened. They have checked genetic databases all around the world and there are no other people like these children to be found anywhere. This means that little Everly is now under suspicion as they cannot tell Sarah and Lee if she will begin to have problems. She is just going to have to be watched closely.
Now, Lewis has also spent a few weeks in ICU and has endured operations and treatment to keep him alive. This will be another indefinite time in hospital. Sarah and Lee spend alternating nights each in the hospital with him so that he has one of them with him at all times. So, this family now begins another long, terrifying journey, with no guarantees of a favourable outcome. Lee has had to take leave from his job just to help look after Lewis and juggle the other children. The family have been fighting Centrelink and their bureaucratic nightmare on top of this living nightmare, just to get some funds to help with their daily car parking and bills for the hospital while trying to keep their home afloat.
This isn't just a story, this is a real, living traumatic nightmare that is unfolding daily. The bad luck this couple have endured would have broken any of us. Yet they remain united in their love for each other, their children and the desperate hope of having a family all under the same roof one day.
Please help them if you can…these guys just need a break.
Organizer and beneficiary
Kerry Longden Galea
Organizer
Seabrook VIC
Sarah Gambin
Beneficiary
