Half a Heart & Still Full of Hope

Hi I am fundraising for Heather and her son Savoy. Savoy was born with a half a heart a condition called Hypoplastic Left Heart Syndrome.  He had his 1st major open heart surgery at a week old and 3 more major open heart surgeries by the time he turned 3. On top of the open heart surgeries he has had numerous other heart caths and procedures. Heather found out when she was 20 weeks along of her sons heart defect and also told how most children with his defect don't make it or pass shortly after birth. She wasn't given many options she could do nothing and he would pass in about a week, she could wait for a transplant again risking that he would shortly pass due to so many on the list or she could do she stages of open heart surgery which was the best option for her when it came to Savoy. After Savoy was born they did a front page story on him in the Des Moines Register due to his heart condition to let people know about the awareness and about Savoy's story when he was just so small. His health conditions and concerns did not stop there. When they preformed his 1st open heart surgery they were not aware that Savoy was also a hemophiliac and bleeder and his 1st open heart surgery took 18 hours as he was just only a week old. After they were able to get the bleeding to stop he remained in the hospital for a couple months in the NICU/PICU before he was ever able to go home due to his health. Thru out Savoy's life he has beaten so many odd and things that they said he could and would never do and has always been the happiest kid you could ever know or meet. He always has a smile on his face no matter what. Heather used to have to drive Savoy from Iowa to Minnesota just for blood draws at a special blood Dr's as well at take trips from Des Moines Iowa to Iowa City Iowa to a hospital for care after one of his home heart Dr's had moved away. It made things so much easier when Savoy was able to get the care and Dr's needed in his home city but now having to travel has made things hard on Heather. About 7 years ago Savoy was the 1st US recipient to receive a covered stent after waiting a year and a half for the FDA to approve him and also passing an act in his name for this. This was a successful procedure for Savoy which helped close up some of the small leaks in his 1/2 a heart. He has numerous stents and covered stents. He is now 15 years old and still in and out of the hospital lately with numerous appointments and procedures. He has a smile that could light up any room he enters and a smile that is so infectious! Thru all and everything Savoy goes thru you will never hear him complain. He is such an amazing kid!  He is a HUGEE wrestling fan and one days hopes and dreams to meet some of his favorite wrestlers. 

For along time Savoy was doing well with his health and sometimes in and out of the hospital for stays and regular appointments but about a year ago they found out that Savoy now has cirrhosis of the liver after having his final stage of open heart surgery called the Fontan that he had when he was about 3 years old. On top of that Savoy now has scoliosis of the spine and the curve has progressed by almost 60% in less than 2 years. The Dr's are concerned that with as much as it has curved it will effect his half a heart and lung function. He tried 2 body braces wearing then from 16 to 18 hours a day and it was no help at all. At that point they decided surgery would be the best option even though it would be very risky and complicated.  In Sept 2021 they attempted  to do a severely high risk spinal surgery on Savoy in Iowa City that was unsuccessful as Savoy's heart and body could not handle the surgery and his mother almost lost him. The Dr had just started to cut him from top to bottom and did not get to do the surgery due to his heart and body not being able to handle it. He was then in the ICU and on a vent for a little bit and a few days before moving to a regular floor and then able to go home to heal from being cut open even tho he didn't get the surgery.  After that in Dec 2021 Savoy went back to Iowa City for a heart ablasion in which they fixed the atrial flutter that they feel was the issues when attempting spinal surgery. Now coming up May 24 2022 they will again be attempting the severely high risk spinal surgery again. His mother is terrified but if Savoy does not have the surgery the Dr's feel it could cause a lot more issues but at the same time if he has the surgery they have to worry about many complications there as well.  He has had to see all kinds of numerous new Dr's and clinics to be sure that his body is ready for this surgery and even tho they thought his body was ready the first time it was not. Once he has the surgery and if it is successful this time he will be in the hospital up to 2 months or more as this is a severely high risk surgery on top of off of all his other health complications.  Since going thru all of this and into 2022 Savoy has his good and bad days. He has now started having bloody noses out of nowhere and had 3 in less than a week and a half and 2 of them times he ended up in the emergency room. One of the most recent times  he bled out so badly that he had to have a transfusion and receive platelets.  With Savoy having a bleeding disorder something like this is not good and very concerning. 

Heather is a single mom struggling to make ends meet and right now her main concern is being able to always have and get Savoy all the care he needs even if that means being home from home long periods of a time and having to travel to different towns and states to do so. She gets behind on bills at times but tries to do the best that she can for Savoy and her other sons. She does what she make to try to make and always keep her kids happy. Savoy is honestly one of the happiest kids you will ever meet even considering all the things life has thrown at him.   She does not work due to his health as well as her own poor health.  Heather has always been the giving type and always tries to do for others even when she is struggling herself and I thought it would be so amazing if anyone could help her out in a time like this. This would mean so much to her and her sons and I appreciate each and every person who is willing to help her at a time like this. She is needing to raise funds as soon as possible as his next surgery date is coming up soon!