This is Ryan and Nichole and their four children. Ryan was diagnosed with a rare genetic disorder called Familial chylomicronemia syndrome. This disease is a severe hereditary disease that prevents the body from breaking down fats. 1-2 people out of every million have this. This disease causes high levels of triglycerides in the blood.
His symptoms are:
Triglycerides levels over 9,000 (Normal is less than 150)
Thick milky blood
Memory problems and confusion causing work and child care issues
Chronic abdominal pain
Pancreatitis and gall bladder issues
Fatty deposits on the skin of extremities, including the bottom of his feet, are very painful and called xanthomas. They are also in the joints and tendons
Numbness in the feet and legs
Pre-diabetes due to strain on the pancreas
High blood pressure
Ryan has been suffering from symptoms of this for years but was only diagnosed two years ago. Earlier this year, he was placed in a drug trial for this rare disorder. It was working, and he was feeling better; the deposits on his skin were resolving, and his triglycerides were coming down. A few months later, he got a call. They canceled the drug trial because they didn’t have enough people to participate. This is a death sentence to him, and he feels like he is living on borrowed time. The doctor told him ten years ago that based on his blood work, he would be lucky to live to 35. He turned 40 this year! It has taken a physical and emotional toll on him and his family.
Due to the nature of this disease, Ryan is missing a lot of work. They struggle to make ends meet as he is the primary breadwinner. Nichole is going back to college online, knowing she will someday have to take on that role.
They need your help! They are struggling both emotionally and financially. Anything you could give to help this beautiful family would be greatly appreciated.
Organizer and beneficiary
Benton Harbor, MI