Funds For Weston The Warrior
Donation protected
On a beautiful sunny Monday morning on June 29th 2015, little Weston Lee made his grand entrance into the world. Our hearts were filled with such joy to welcome this special little boy into our family.
Unfortunately, joy quickly turned into concern when at 6 weeks old it was discovered Weston had a heart murmur. Soon after this discovery, he was followed closely by his paediatrician at the hospital for weekly blood pressure and weight checks. During one of these appointments, his paediatrician noticed how high his blood pressure was in his arm and low in his leg, a sign of something serious. That led us to the IWK in Halifax.
October 19th, Weston received a diagnosis of Williams Syndrome. We quickly learned most had not heard of this syndrome as it is rare. Upon receiving this diagnosis, we also got discouraging news that Weston had supravalvular Aortic Stenosis (SVAS) as well as Branch Pulmonary Stenosis. Both were considered mild/moderate at the time but Weston would need an MRI to further investigate his Aortic Arch. If this was found to be narrowed, Weston would need immediate open heart surgery. The problem in doing an MRI or doing any procedure that involves the use of anaesthetic is that those with Williams Syndrome have difficulties with the anaesthetic and are at an increased risk of a major cardiac event that can include death.
Thankfully his MRI revealed he did not require surgery at that time but he would need to come back for regular echocardiograms.
Upon his most recent (June 1st) Echo, it was decided to seek a second opinion from an expert on Williams Syndrome just to make sure nothing was missed. Unfortunately, it was.
The news came on July 26th that Weston’s heart was believed to be far worse than anyone would have imagined. He is now considered to be on the severe end of the spectrum as far as heart defects go and new concerns have been raised with his coronary arteries possibly having issues as well which is unfortunately deadly if not repaired. His mother also learned Weston has significant hypertrophy cardiomyopathy (something else that wasn't picked up on)
After IWK learned of this news, they developed a plan of action which includes a cardiac catheterization procedure to be done on Aug 30th to see what exactly needs to be repaired in his heart. Unfortunately this test brings forth significant risks for Weston because in involves him being put to sleep so they can get proper images of his heart. The doctor who also gave the second opinion believes Weston is at an even greater risk of a major cardiac event after seeing the previous images of his heart.
The IWK also believes Weston will be better served at The Hospital For Sick Children in Toronto, ON for surgery to repair his heart. This means that Weston would be most likely airlifted to the hospital from IWK.
For Weston’s family and older sister (3 years old) this means dropping everything to be with him during one of the scariest and most difficult days for sweet Weston.
We have learned that just because someone is sick, life still goes on and bills still roll in. The money raised would ensure that Weston’s family could continue to remain by his side as long as he is in the hospital without worrying about financial things at home. The sole focus should be on sweet Weston.
Unfortunately, we do not have a time line for how long Weston would be in Toronto as it all depends on his recovery. We have estimates of 2-6 weeks. Although this could be more or less.
Our family thanks you in advance for helping us in our time of need.
Unfortunately, joy quickly turned into concern when at 6 weeks old it was discovered Weston had a heart murmur. Soon after this discovery, he was followed closely by his paediatrician at the hospital for weekly blood pressure and weight checks. During one of these appointments, his paediatrician noticed how high his blood pressure was in his arm and low in his leg, a sign of something serious. That led us to the IWK in Halifax.
October 19th, Weston received a diagnosis of Williams Syndrome. We quickly learned most had not heard of this syndrome as it is rare. Upon receiving this diagnosis, we also got discouraging news that Weston had supravalvular Aortic Stenosis (SVAS) as well as Branch Pulmonary Stenosis. Both were considered mild/moderate at the time but Weston would need an MRI to further investigate his Aortic Arch. If this was found to be narrowed, Weston would need immediate open heart surgery. The problem in doing an MRI or doing any procedure that involves the use of anaesthetic is that those with Williams Syndrome have difficulties with the anaesthetic and are at an increased risk of a major cardiac event that can include death.
Thankfully his MRI revealed he did not require surgery at that time but he would need to come back for regular echocardiograms.
Upon his most recent (June 1st) Echo, it was decided to seek a second opinion from an expert on Williams Syndrome just to make sure nothing was missed. Unfortunately, it was.
The news came on July 26th that Weston’s heart was believed to be far worse than anyone would have imagined. He is now considered to be on the severe end of the spectrum as far as heart defects go and new concerns have been raised with his coronary arteries possibly having issues as well which is unfortunately deadly if not repaired. His mother also learned Weston has significant hypertrophy cardiomyopathy (something else that wasn't picked up on)
After IWK learned of this news, they developed a plan of action which includes a cardiac catheterization procedure to be done on Aug 30th to see what exactly needs to be repaired in his heart. Unfortunately this test brings forth significant risks for Weston because in involves him being put to sleep so they can get proper images of his heart. The doctor who also gave the second opinion believes Weston is at an even greater risk of a major cardiac event after seeing the previous images of his heart.
The IWK also believes Weston will be better served at The Hospital For Sick Children in Toronto, ON for surgery to repair his heart. This means that Weston would be most likely airlifted to the hospital from IWK.
For Weston’s family and older sister (3 years old) this means dropping everything to be with him during one of the scariest and most difficult days for sweet Weston.
We have learned that just because someone is sick, life still goes on and bills still roll in. The money raised would ensure that Weston’s family could continue to remain by his side as long as he is in the hospital without worrying about financial things at home. The sole focus should be on sweet Weston.
Unfortunately, we do not have a time line for how long Weston would be in Toronto as it all depends on his recovery. We have estimates of 2-6 weeks. Although this could be more or less.
Our family thanks you in advance for helping us in our time of need.
Organizer
Melissa Lynn
Organizer
Fredericton, NB