BAGS FOR BUTTONS
Thanks for taking the time to visit my JustGiving page.
My son Caden who is now 3 years old was born with a congenital defect which led to kidney failure from birth. Caden has had many surgeries and deals with a number of issues that go hand in hand with kidney failure. Caden has one kidney that functions around 10.5% meaning he feels lethargic and sick most of the time. This is controlled with medication to help with sickness. Caden has to have injections frequently to help with regeneration of red blood cells, blood tests to check his levels and has fluids and feeds through a feeding tube in his tummy. During these various treatments we give him options, tell him hes a super hero and that the injections are to give him extra powers. We ask him where he wants to sit if he wants to see whats happening, anything we can to give him options. Through play therapy and rewards this is becoming more bearable as his understanding grows.Caden is fortunate his dad is a match and is able to give him a chance at new life when he donates a kidney to him. This will take place following major bladder reconstruction and a period of dialysis where we will prepare the body and ensure the bladder is ready and safe to receive the new kidney. During the past few years our main goal is to get Caden as big as we can making it easier and safer for this surgery.This has not been easy. Kidney kids are very small due to poor growth hormone and poor feeding, and many of them need naso gastric and gastrostomy tubes to be fed, this is for many of them the only way, some never eat at all until they receive a transplant therefore the only way is to use a feeding tube.
Caden uses his feeding tube all through the night and many times during the day for a number of hours. He is a very busy 3 year old despite his condition and enjoys life.Caden does not like his feeding tube, he feels restricted, frustrated and often embarrassed. The company that supply the feeding equipment offer a stand and a back pack to use during feeding. The stand is great for overnight feeds, and for when children are sat still. The backpack is designed for children to wear on their backs or attached to wheelchairs and push chairs. This back pack serves its purpose efficiently but is plain in colour. You know if you see this bag its something different. Caden hates it. He says to me all the time that spider man doesn't wear this bag, and hes worried that his friends wont like it. This makes feeding times extremely difficult. If I had a super hero back pack I know he would wear it, his friends wouldn't even notice it was a feeding bag and other parents would ask less what the bag was for, after all sometimes its nice to be normal. There are no company's here in the UK that makes different bags for tube fed children with different characters and themes. Why is this not available here, why is there nothing for our children to show their individuality and interests for something as important as nutrition.
I am raising money to get children a feeding bag. Regardless of their disability or health condition. I want to get these bags available in the UK and to give our children a choice, individuality and to encourage feeding to be fun.
So please dig deep and donate now.k