Gardner's syndrome-de Gardner-SOS

Introducing the multiple faces of Gardner Syndrome, a form of familial adenomatous polyposis (FAP) that is characterized by multiple colorectal polyps and various types of tumors, both benign (noncancerous) and malignant (cancerous). A rare genetic mutation that affects up to 1 in 31,250  people.  We are a family of ten composed of my wife and myself, our two adult children along with their spouses and four little ones. Of the ten, five of us have been afflicted with this hereditary illness and although only half of us are afflicted, this insane sickness has affected the entire family.

The defective adenomatous polyposis coli (APC gene) started with Connie’s father, she inherited it from him and both of her two children inherited it from her. At eight and ten years respectively both Kevin and Emmanuelle underwent colectomy surgery removing their large intestines. Kevin and Emmanuelle both had two children of their own of which both of Kevin’s children inherited the defective APC gene. Kevin’s two Children were tested for the defective gene and it was confirmed they had Gardner’s Syndrome. Earlier this spring, Kevin’s youngest child, Layla had been frequently complaining about abdominal pain and was starting to miss a lot of school. She was in and out of the emergency room so often but the medical staff could not determine what was wrong with her, a few even thought that she was faking but she wasn’t and suffered quite a bit before things changed. After a lot of insistence from the family, the doctors finally decided to give her a colonoscopy and the results were devastating.  In late May, Layla had the same operation her father, aunt and grandmother underwent years ago but unlike them she ended up in having her large intestines removed with a reversible colostomy thus entailing a bag outside of her body. Her operation was plagued by miss fortunes and miss haps requiring a month and a half stay in the hospital at St-Justine’s in Montreal. Her father, Kevin was not faring any better. At the same time that they were informed that Layla would need an operation, following a routine annual follow-up, Kevin was informed that he had numerous and advanced polyp propagation in his J-Pouch. Kevin hit a wall. His whole world was turned upside down. His surgeon immediately suggested he get a colostomy and irreversible at that to prevent cancer. Shock led to discouragement and he had to take a leave of absence from the office for the last few months in order to come to terms with his sudden life change. His employer has been super supportive and has treated Kevin with respect and empathy through this difficult time.   But now to make matters worse, Layla’s older sister, Taisha, just had a colonoscopy done in august as she too had been identified as having Gardner’s syndrome and as was expected, she is full of polyps in her colon, duodenum and in her stomach. At this moment she is super healthy and is not experiencing any pain for now but given the pathology of this sickness she will inevitably require a surgical intervention. Kevin was floored when he heard the news. He is battling now, not only for his daughters, but himself as well.  

The journey had not just begun, they’ve been on this one all of their lives. Discouragement and fear have left Kevin in a state of profound reflection.  At only 32 years of age, he has reconciled with succumbing to his illness and dying. But it destroys him inside to think about not being able to be around for his daughters so he ultimately decided to fight and has drastically turned his life around. Connie started a Facebook outreach page a while ago and Kevin has recently jumped on board and is getting involved. It’s a place for others afflicted with the sickness to learn about how we have been dealing with this curse. Over the last few months, Kevin had adopted a plant based only regiment and put off his operation in hopes to beat his sickness through diet and positive living avoiding stress and conflict. Last week, Kevin went in for his intervention but he insisted that they only remove polyps and to not to go ahead with the colostomy as his surgeon suggested. He had 80 percent of his polyps removed and was doing well but he had severe hemorrhaging a few days after he was discharged and ended up in shock at the emergency ward.  A colonoscopy was immediately performed and the doctor on duty found an open severed artery which was promptly clamped off. Presently he is in convalescence and stable but his incurred medical, traveling and special needs expenses have completely exhausted their savings. His dreams to buy a house out in the country and get back to nature were scraped, financially he is ruined and was forced to declare bankruptcy.

And that’s what brought me to GoFundMe. Connie and I along with others have  done all that we can and have decided to launch this funding movement for our son and his family. Kevin is in the process of healing and is doing his best to keep his head above water but both he and his partner, Cynthia have been torn apart emotionally and physically and they are paying the price. To help him and his family pass through the next few months and to put their minds at ease at least financially I would like to raise 10,000. This will just barely cover all of the medical expenses and associated costs  incurred since this journey began but it will at least give them a sense of relief in what seems to be the beginning of a long, long way to go.

 

On behalf of my family and myself personally, thank you from the bottom of our hearts. If the least you can do to help out is just share this post it would be greatly appreciated.

Bobby Lacombe