When a parent learns their child is ill it takes them to a place where all they know how to do is fight. Fight the disease. Fight the culprit that is harming your greatest love. Fight to the end! The weakest become unstoppable. The uneducated become scholars in their un-chosen field.
When any mom is expecting a baby their single biggest worry is health. Will my baby be healthy? It’s the biggest question and biggest concern. In the beginning it’s the only thing that really matters. At first glance we are relieved to see 10 fingers and 10 toes. As time goes by we slowly gain confidence that our baby then toddler is going to be a healthy human being. By the time your child reaches 6 yrs. old it is fair to think that “health wise”….they likely are going to be fine.
When Hayley became sick in 2006 at 6yrs old I never imagined we would end up with a diagnosis that would lend itself to two words…No Cure. These words shot through my head like lightning through an iron rod and have never stopped. Forging forward in every direction I keep telling myself the more I learn the more I know that somewhere out there a cure is waiting!
An ugly diagnosis like this has made the last 6 years of Hayley’s life as miserable as you might think. It has been a multitude of tests, procedures, doctors, opinions and cutting new paths in technology, each one making her pay a price and stripping her of her sense of security one dead-end at a time. Hayley’s condition is rare and no-one seems to know anything; doctors included. Information and case studies are almost non-existent yet everyone’s an expert. This gets old very fast. I often wonder how they would research this beast if it was their child!!! We all know that answer and we don’t need letters behind our name to get it.
Due to the rarity of Hayley’s disease, most everything is trial and error and I, her mom have become a walking sponge for children living with Chronic Pancreatitis, SPINK1, Pancreatic Stones, feeding tubes, PICC, TPN, CPB, GI, over 100 IV starts and every other GI pediatric acronym you can think imagine. In many cases Hayley has become a trail-blazer who
knows there is only one option…FIGHT!
Oddly, the biggest and likely most highly funded hospital in Canada doesn’t seem to have any other case studies that resemble what Hayley is fighting. It doesn’t get worse than that….OR DOES IT?
There’s nothing worse than having a disease where answers are unknown….OR IS THERE?
You would think having a disease that has “no cure” trailing after its name would be enough; however this disease comes with an added gift….DAILY PAIN!
We hope to meet and hear the stories from children of all ages along with their parents who also share in the quest to find the best help possible for our children and ourselves. We hope to learn about any disease, illness and anything your child may be fighting medically with special attention illnesses causing “Pain” any pain. We hope to raise awareness, find support and take every story and suggestion seriously. We know there is strength in numbers and our children will bring out the passion we all share to be the strongest we have ever been. All in an effort to make them feel better one child at a time!
Through C.L.I.P. we hope to find some peace of mind for EVERYONE!
Children Living in Pain – CLIP – is a Non-for Profit Organization. Donations to help children
with medical needs of all description can be sent to:
Children Living in Pain – CLIP
10 Huron Street