Help needed for a young family
Organized by: Josée Paliquin
Cond't...After removal of cast
March 14, 2016
Hello. My family and I as well as my work place have been helping this family. Unfortunately, it is not enough.
Jean-François is suffering from EDS. EDS full name is Ehlers Danlos Syndrome and unfortunately there is no cure for this disease. EDS is a rare disease that affects the connective tissue, the tissue that provides support to many body parts such as the skin, muscles and ligaments. The fragile skin and unstable joints found in patients with EDS are the result of faulty or reduced amounts of collagen. Collagen is a protein, which acts as a "glue" in the body, adding strength and elasticity to connective tissue. EDS is a genetic disorder which unfortunately is hereditary and can be given to their children.
Jean-François and his wife Valérie have 3 beautiful children, 1 son and 2 daughters. All 3 children have a 50% chance of having this disease. His son is already demonstrating some symptoms of EDS. They will be tested once they are old enough (about 12 yrs old).
Jean-François lives in constant chronic pain and must take narcotics to help manage the pain. This is extremely disabling from a physical, emotional and social standpoint. Valerie cannot work as she needs to care for her husband while raising her 3 young children.
Being so young, they have no savings and can't manage on what the disability gives them. He still needs multiple surgeries and braces to help alleviate part of the pain. Special braces are extremely expensive and may not necessarily be covered by disability. In addition, sometimes he must pay first and then will be reimbursed but it can take up to 3 months. Many medications are not covered. For example, he needs B-12 vitamin injections but it’s not covered (over $250 per month), medication for stomach reflux (GERD), etc.
They need money to help pay for food, rent, kids clothing and most of all medications that are not covered, special tests/treatments, rehab/physio and many braces (knee braces are needed at the moment for both knees). At this time, there is no EDS specialist in Ontario with the expertise needed.
He has had a lot of surgeries to date and will have to undergo many more in the future to repair joints damaged by repeated subluxations/dislocations (shoulders, knees, ankles). Due to EDS, the skin and the connective tissue of the affected joints do not necessarily heal properly after each surgery and often requires additional surgeries.
I am asking for your help. Every little bit counts. Anything you can do would be much appreciated.
Thank you for taking the time to read this horrible true story. I will post updates as they become available.