Kaiden's Care Kits for Cystic Fibrosis
Kin Club of Russell
September 26, 2012
OVERVIEW – On average, two children are born in Canada every week with Cystic Fibrosis(CF). One person dies from Cystic Fibrosis in Canada each week. Of the 63 patients that died in 2009, half were under 28 years old. Providing support and information to all Canadian families of newborns diagnosed with Cystic Fibrosis is our goal. “Kaiden’s Care Kits” provide much needed medical supplies, support and information to Canadian families of newborns diagnosed with CF. THIS IS KAIDEN’S STORY – Hi, my name is Kaiden and I was born in October 2009. When I first met my mummy and daddy they didn’t know that there was something wrong inside my tummy that made it impossible for me to drink milk or go to the bathroom. I had to be taken from my hospital to the NICU at the Children’s Hospital of Eastern Ontario (CHEO). The doctors and nurses were really kind and helpful. They told mummy and daddy that I was born with a blockage in my tummy; they called it “meconium ileus”. It took a few days and a bunch of tests and treatments but eventually they fixed my tummy and I was able to eat on my own and go to the bathroom without help. The doctors told mummy and daddy that I had a disease called Cystic Fibrosis and that my tummy problem was caused by mucus blocking up my insides. This made mummy and daddy very sad and mummy cried a lot. The CHEO CF team came to meet all of us and explained to mummy and daddy what having CF means for me. Although they were in shock and didn’t know anything about the disease, mummy and daddy were determined to learn all they could to help me get out of the hospital and to keep me healthy. I take special enzymes before I eat, and vitamins to help me stay healthy and I get special taps done on my chest so that my lungs will stay clear. I have to stay away from germs and people who are sick, and they make me wash my hands all the time! I know that mummy and daddy were very scared at the start, but we are lucky to have lots of people who support us on our journey. Because of what I went through, my family decided to do something to try to help others at the start of their journey. Mummy has put together a kit of items and information that we found helped me after the diagnosis and that continues to help all of us now. I know that each journey will be different, but I hope that my “Care Kit” will help others along the way. BACKGROUND & GOALS - This project is national and long term in scope, designed to aid 110 families per year throughout Canada to learn to cope with the devastating diagnosis while ensuring their babies will be cared for and protected during their early fragile months. When a parent receives the news that their newborn baby has Cystic Fibrosis it instantaneously shatters their dreams and can be described as nothing less than devastating, and they are left asking, “Will my child even have a future?” It is a lonely time for the parents as they are faced with the challenge of understanding the disease and in learning how to cope with it and how to fight it; it is overwhelming and leaves them with a sense that they are alone on their journey. Although every family’s and every child’s battle with CF is different, the care and treatments tend to be similar. The kits serve to be a sort of “Welcome Wagon” for these new parents, providing them with a sense that they are not alone and that there are people out there who have been where they are. In order to accomplish their first goal (providing enough kits to CHEO), the family partnered with the Kin Club of Russell (www.russellkin.com) to fundraise to cover the costs for a one-year supply of the kits. Each kit is valued at $170.00 and includes items to educate (CF Nutrition handbook); to assist in treatments (chest physiotherapy cups); to prevent infection and sickness (antibacterial gel); to connect (local CF Chapter information); to alleviate financial burdens (parking pass). Although comprised of many smaller items the kit as a whole provides wide-ranging support and a sense of belonging to a larger community, one encompassing people who are there to help and who understand what the family is going through. Many kits have been distributed to date and have been well received and appreciated by the families. “Wow! These are all the things we need for our baby. Someone understands what we’re going through and cares enough to help.” ” Receiving our kit as quickly as we did provided an immense amount of comfort and eased our mind, that we as parents were able to handle the diagnosis and move forward in our son’s treatment and daily care with confidence”. – Quotes provided by two moms who received a kit. “I certainly witness these feelings of confidence and comfort when going through the kit with these families.” – Anne SMITH – Nurse Coordinator CHEO CF Clinic "Cystic Fibrosis Canada is pleased to introduce a Pilot Project within select Canadian CF Clinics in 2013 for a Cystic Fibrosis Canada Resource Kit for the purpose of introducing this valuable resource to newly-diagnosed cystic fibrosis families. The CFC will begin this Project by obtaining input from clinicians and opinion leaders to further refine the Kit's components. Should the feedback from this Pilot Project validate this Resource Kit as a valuable tool for newly-diagnosed CF families, Cystic Fibrosis Canada is prepared to expand the distribution of these Kits to additional Canadian CF Clinics as a component of our program." – David GILMER – VP, Fund Development and Marketing, Cystic Fibrosis Canada. There is no known cure for CF, but with your support, there is real hope.