ACF11376

Kaiden's Care Kits

  • Submitted by:

    Rhodes & Williams Limited

    Organization:

    Kin Club of Russell

    Location:

    1 Birch Crt, Russell ON, K4R 1B8

  • Idea Created:

    September 27, 2011

    Budget:

    0k - $50k (< 2014)

Overview:

Providing support and information to all Canadian families of newborns diagnosed with Cystic Fibrosis. “Kaiden’s Care Kits” provide much needed medical supplies, vital support and information to Canadian families of newborns diagnosed with Cystic Fibrosis. This project is national in scope, designed to aid 150 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. “Kaiden’s Care Kits” were designed by a mother of a newborn Cystic Fibrosis child who recognized that something was missing in those early days post diagnosis. Their own need to know and understand the disease as well as to learn to cope with the added needs of their son Kaiden led to the creation of a kit of medical supplies, goods and information designed to support and educate new CF families. All the items and information in the kit were added based upon the family’s own trial and error until they found methods that worked to cope and to build their routine. Although every family’s and every child’s battle with Cystic Fibrosis 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 the Children’s Hospital of Eastern Ontario (CHEO)), the family partnered with Kin Canada (www.kincanada.ca) to fundraise to cover the costs for a one year supply of the kits. Each kit is valued at $150.00 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 (CHEO 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. "When we received our son's diagnosis it was reassuring to receive a kit full of things that would help to make the transition easier. We have used all the supplies and read the literature of this kit and without it we would have made the transition from hospital to home with less confidence" - Amanda, mom to Carter and first family to receive "Kaiden's Care Kit" Parents must learn to cope with this disease in their own home on a daily basis. The complexity of the care and treatments is overwhelming in the beginning until such time as they figure out what works for them and they can get set in their own routine and begin to fight for their child’s wellbeing and future. The Aviva Community Fund Challenge will assist the national launch of this support program in funding enough kits to be distributed nationally to every family of a newly diagnosed Cystic Fibrosis child. This national launch will help lay the foundation to sustain the project through Kin Canada’s support for years to come. Cystic Fibrosis (CF) is the most common, fatal genetic disease affecting young Canadians. CF is a multi-system disease that affects mainly the lungs and digestive system. In the lungs, CF causes severe breathing problems. In the digestive tract, CF makes it extremely difficult to digest and absorb adequate nutrients from food. Thick mucus also blocks the ducts of the pancreas, preventing enzymes from reaching the intestines to digest food. Therefore, persons with CF must consume a large number of artificial enzymes (on average 20 pills a day) with every meal and snack, to help them absorb adequate nutrition from their food. They must also follow a demanding daily routine of physical therapy to keep the lungs free of congestion and infection. The Cystic Fibrosis community is a small one, at the present time, approximately 3,400 children, adolescents, and adults with Cystic Fibrosis attend specialized CF clinics. On average, two children are born in Canada every week with Cystic Fibrosis. One person dies from Cystic Fibrosis in Canada each week. Of the 63 patients that died in 2009, half were under 28 years old. There is no known cure for CF, but with your support, there is real hope.