Pattys storey

Hey everyone

Thanks so much for taking the time to read this.

Patton Alden is my grandson, son of my youngest born.

Patton was born 24th December 2012 with all of us completely unware that anything was wrong. After 14 hours of him unable to feed he was checked out and they found out that patty was missing a part of his aorta and has a large VSD and he needed immediate repair to survive. Due to Christmas the family waited four days to have his first surgery which all went well. While he was recovering four days after the surgery we were given the news that patty had 22q.11 deletion syndrome. Which would mean we would be seeing some of the 190 different symptoms over his life.
With in his check ups with cardiologist over the year after his surgery we were informed that Patton has a bicuspid valve in his aorta. Most people have tricuspid valves and his was not working effectively by the time of 2 all the muscle around the valve was pretty much unable to move anymore due to stenosis. At 2 years old he had a second open heart surgery to remove the useless muscle. After the surgery this area was still not fixed but worked in a much better way. The family were told then that eventually probably around 5 years old he would need his valve replaced by his pulmonary valve and a donor valve would replace the pulmonary valve. The family were not sure when this surgery would happen but it would depend on how long his heart and body would handle his problems.
At 4 years of age the family had meetings with the cleft palate team at Westmead since his birth as he had always had soft palate issues. Much of his palate doesn’t work properly by the age of 4 all realized his inability to talk was due to these issues and another surgery was put on his cards. Two surgery’s were proposed but they decided on the less invasive procedure hoping that it would work well enough to get his palate to a place where he was well enough to talk. Surgery went well again and after two years of speech therapy and only slow deterioration of his heart condition the second palate surgery was needed as he got to 6 years of age with still little ability to talk.
This month the family packed up for a week to go to Westmead childrens hospital to have his palate surgery hopefully completed. He was completely set for surgery and we had our last appointment for the day with his cardiologist to clear him for surgery. Only hours later when all the results were reviewed we got the news.
Patton’s heart function has deteriorated at a massive rate since his last appointment in March. The surgery the family where told would happen at around the age of 5 will be needed as soon as possible. In October or early November a month before he turns 7, Patton will have his third open heart procedure called the Ross procedure. Which will mean he will likely be 9 years old before he will be able to have surgery to help him to speak.
Due to the quickness of this surgery and the likely 2 weeks or more the family will all need to be in Sydney which is 5 hours from home. The family is not 100 percent prepared for this operation as it was unexpected and they have had nothing but good news over the years. All though the government and Ronald McDonald house will help with all they can, we are raising money to help the family through this tough time and doing what we can to put a smile on Patton's face and those of his 3 young siblings.

Please help us support this family through this difficult time and highly stressful time.