Chases surgery fund

UPDATE :
CHASE HAS BEEN BOOKED INTO TORONTO SICK KIDS FOR THE END OF FEBRUARY FOR 3 SERIOUS SURGERIES AT ONCE. DOCTORS FEEL WE MAY BE THERE FOR UP TO 6 WEEKS AND NOW WE REALLY NEED THE HELP OF ANYONE WILLING TO DONATE TO HIS CAUSE TO MAKE THIS SURGERY HAPPEN!! WITHOUT IT HE WILL BE IN A GREAT DEAL OF MORE PAIN AND MORE ISSUES WILL ARISE CAUSING MORE DAMAGES TO HIS LITTLE BODY AND EVEN MORE DAMAGE TO HIS SPINE... IF WE DO NOT RAISE ENOUGH THE SURGERY WILL HAVE TO BE CANCELLED AND RESCHEDULED FOR LATE NEXT YEAR... PLEASE HELP OUR FAMILY MAKE THIS HAPPEN..


I would like to personally thank you for taking a moment to learn about our son Chase. He is a fun loving boy that was born with a rare condition known as Prune Belly Syndrome (also known as Eagle Barrett Syndrome). Prune belly syndrome is a condition that takes place during the pregnancy stages on which the child's bladder does not drain forcing the urine to stretch out the bladder and back up into the kidneys causing serious damage to a babies development. With no where for the urine to go it keeps stretching out the organs making less room for other organs such as the lungs, the heart and other important things from developing. At 20 Weeks we found out that our son was seriously ill with this rare condition and there was nothing that could be done to help save his life, for at this point they did not think he would survive the pregnancy, let alone birth. My doctor tried many procedures to drain Chase's bladder during the pregnancy which helped create room for his lungs and heart to develop. On December 10th, 2009 our beautiful little boy was born here in Regina without knowing what the future would hold. After a few surgeries and countless hospital stays, Chase is now 3 and currently has one partial functioning kidney and no function of his bladder or bowels. Daily he has to be catheterized 3-4 times and spends many hours in doctor offices and emergency rooms for infections in his kidney and bladder, which never seems to end. He has such a low immune system his body take weeks longer just to recover from a small infection let alone a larger one. The doctors have now decided to do a life changing operation in Toronto to stop his bladder from stretching and tucking his stomach in so he can look "normal" and maybe have complete function and use of his bladder and bowels on his own. They are planning on doing 3 procedures in one where they also are putting in a channel through his belly button so he can be catheterized anywhere there is a washroom available if needed, opening up many opportunities for him to be a regular child and for our family for we can not travel anywhere longer than 4 hours away for he needs to be drained. We have had a lot of consideration over the years of doing this procedure but now the doctors have decided it needs to be done now or more damage will be done to not only chases bladder and functioning kidney but to other organs and his spine as his bladder keeps growing. Without this surgery chase will end up in a wheelchair by the time he is 5 and the damage to his spine (from his bladder being so large and heavy) will be so sever that they will not be able to reverse the effects opening a new door to many more health problems we want to prevent.

Up until this point we have struggled with chases medical finances on our own maxing out credit cards and pushing our small budget to the extremes. We have tried everything we can do to come up with the funding needed for this surgery but have found ourselves at a dead end. We are a single income family with 4 children (because of chases medical situation his mother can not work) and with his condition being so rare there is no help to move forward at this time to have this surgery done because of the expenses being so great of going out of province for an extended period of time. We are reaching out to our community for any help at all as anything is greatly really appreciate. Thank you again for taking the time to learn about Chases story.

　

Thank you from The Gallant Family, especially Chase.




(MORE IN DEPTH STORY ABOUT CHASES CONDITION AND WHO HE REALLY IS AND WHAT PRUNE BELLY SYNDROME IS ALL ABOUT)

I would like everyone to meet Chase, a sweet fun loving little boy whose smile can melt your heart in an instance. He loves Lightning McQueen and Buzz Light-year. His favorite colors are blue and purple. He loves the outdoors and loves looking at different kinds of bugs. He likes playing tricks on his brothers and is the comidien of our family. His favorite thing that he loves the most is hanging out with his uncle Nicki (sometimes his brothers too) and playing video games. He is also our 4 year old miracle born with a rare condition called prune belly syndrome (otherwise known as Eagle Barrett Syndrome) who never supposed to live.

Prune belly syndrome otherwise known as Eagle Barrett Syndrome is a rare disorder that only occurs in one in every 40,000 births of which 95% are males. The major prognostic factor is the degree of dilation of the urinary tract, 20% of patients are stillborn, 30% die of renal failure or urosepsis within the first two years of their lives and the 50% have varying degrees of urinary pathology. Other side effects of Prune Belly syndrome include deficient or absent stomach muscles, urinary tract abbermalties such as an oversized bladder and undescended testicles as result kidney failure, and severe constipation urinary complications. Chase has had to deal with all of these besides kidney failure but there is a great deal damage to his kidneys the outcome is still unsure. It has been found that the abdominal wall is deformed by pressure from a distended bladder due to the bladder outlet obstruction in utero... meaning for some reason the bladder is unable to drain due to a blockage so the urine backs up into the kidneys because it has nowhere else to go stretching out the abdominal wall and damaging the kidneys while they are trying to develop. It is thought that prune belly syndrome is a multisystem disease complex that derives from a primary defect in mesodermal development at about 8 weeks. We discovered chases at 20 weeks but was never told what exactly it was until a few days after birth.

Our pregnancy was rough and no one could tell us answers to our questions, there was only talk about losing the baby until my doctor decided to manually drain his bladder so his organs could have enough room to develop. This process took place more than once by sticking a fine needle into my stomach and into chases bladder taking out more than 250ml at a time. (Which for a little guy was a lot.) When he was born they measured over a 1000ml (a liter) of urine that was in his little body. With having so much urine in his bladder his abdominal wall never has a chance to develop and the urine backed up into kidneys causing severe damage. We take it day by day as much as we can we take the bad with the good. Chases bladder no longer functions and he has to be manually catheterized 2-3 times a day. Not an easy process for a 3 year for sometimes it takes up to almost an hour to completely drain his bladder. Its not the easiest thing to get him to lay down while I drain his bladder, we can not afford fancy things like a tablet. Not only that we cannot travel and do many things he wants to experience because of his condition.

The doctor would like to do a reconstructive surgery on chases abdomen to fold his stomach in so his bladder will no longer be hanging and pulling on his spine and lower back which causes him daily pain. With surgery his stomach will be pulled into his body helping his bowels to maybe function on their own and to help take the pressure off the rest of his developing body. But at this time cannot make the trip to Toronto in his condition to have this done because he cannot sit for more than 4 hours at a time and needs to have his bladder drained every 4-6 hours, so at this time his doctor has decided to put a mitrofanoff in. This is a procedure on which they make a channel for catheterizing him through his belly button. Making it easier to drain his bladder so it can be done more frequently and almost anywhere. With this procedure we are looking at 2-3 weeks in the hospital as long as there are no complications. After this procedure is done and healed we will be on our way from Saskatchewan to Ontario for his next big surgery. The doctor has informed me that we will be looking at 3-6 weeks in Ontario depending on how well chases immune system deals with the second surgery and how well he heals. There is also a huge possibility of a kidney transplant in the future but I honestly do not want to even start thinking about that because with only one functioning kidney that does not seem to be growing with his body the chances are so high.



Chase has his really good days and sometimes they can last up to a week but then he has his really bad days that don't seem to go away. He can't get out of bed and lays there in pain crying that it hurts mommy it hurts. I feel helpless at times because as his mom I am supposed to protect him, take his pain away but there are many days and nights I cannot do anything for him. Never in a million years could I ever imagine what a parent of a sick child would go through until we had our son Chase. I never saw the other side of things, I knew of the frustrations of waiting in the emergency room with a child that had a fever but there is so much fear and concern that comes with every test and surgery. I consider ourselves very lucky for Chase has only had 2 surgeries in 3 years but I know there will be many more to come in the future. I don't think I could count how many countless hours of worrying I have had without knowing what is going on. The many hours of wiping tears for every poke of an IV you are to blame for bringing him to get it done. (The last IV they had to put in his little arm took 18 pokes because his veins just won't hold up for them.) The long hospital stays and traveling all over for testing and surgeries we've already had, is only the beginning of what is to come. As a mother I never imagined having to hold your child down so they can take blood on a regular basis. His screaming breaks my heart every time. Born into a world where doctors aren't just for a common cold but are a regular part of our lives with constant visits to the emergency room for pain and infections that can no longer be tolerated, surgeries you can't explain to a small child, enemas and every flu and cold virus that comes our way because of an immune system that can only fight so much. (Most of the time doctors are unsure of what to do because the condition is so rare, not many even know what it is.) A common cold is hard to kick for his body will start to burn up with a fever which leaves him weak and bed ridden for a day's on end till he can get the energy to be a kid again. Chase has shown me truly what it is to be strong even when there is moments of doubt.

As a single income family with 4 small children (9 ,5 ,4 ,1 yr)Chases medical needs already take their toll on our family budget. He has many special needs that have to be accommodated on a regular basis that there is no extra funding or help for. I have tried working in the evenings to make up the extra cost but my body could not take the toll of only sleeping for 2-3 hours a day and doing all the necessary medical procedures needed on him. My lack of concentration from not being able to sleep put him in the hospital for a week with a serious infection. Other costs that have occurred are just small things in our situation is as simple as him not being able to be potty trained using over a large case of pull-ups in less than a week. His bowels do not work without the abdomen wall therefore he is on a medication to keep his bowels moving constantly. With the cost of his a special diet among many other things and we cannot afford the travel costs for both surgeries and the needs that will need to be met afterwards. Which has left me to ask the help of friends, family, acquaintances, people of the past and people we don't even know: the smallest amount would help more than anyone could imagine: without your help it will be very hard to get the surgeries completed to help him have close to a normal childhood:

thank you for taking the time to read our story and even if you are unable to donate please share so we can get chases story out so it will no longer be a unknown condition...