“My son is living in a different world than I would have if I was the one with CF – if I would have been diagnosed when I was two years old I would not be alive today”
When we called Lotta it was 5PM in Sweden and she was just about to pick up her 13-year-old son Colin and his friend from a boxing class. Colin has Cystic Fibrosis and was diagnosed at the age of two.
A few years after Colin was born Lotta started to notice that he was smaller than his big brother was at that age, and also compared to other children. He didn’t grow like all the other boys. He was always hungry but didn’t seem to gain weight from the calories he consumed. He was tired and lacked energy and had gastrointestinal issues. They brought up their concerns with their physician and after some time it was decided that they were going to perform a sweat chloride test. The results came back with chloride levels indicative of cystic fibrosis. This was verified with genetic testing and it was confirmed that Colin has the dF508/dF508 mutation of the CFTR protein.
“Our physician called me to tell me ‘your son has cystic fibrosis’ – Cystic what? dF508 what? Salty sweat? What is all this? I had never heard the words cystic fibrosis before”. Lotta rushed home and searched on google, what she found made her world fall apart. “I cried for a whole week and could not stop”
Lotta and her husband later went with Colin to the hospital to meet the CF specialists. The care team consisted of physicians, nurses, physical therapists and nutritionists. They spent hours at the hospital and were provided with information and could ask all the questions they wanted. When they left the clinic that day they left for a journey that would change their lives forever.
“He thinks he will live until he is 100 years old”
“We are lucky to live in Sweden where health care and support is fantastic”. Lotta describes some of the immediate help and assistance that were provided to them: Parents who have extra work or costs for a child who is sick or has a disability can receive a long-term childcare allowance until the child is 19 years of age. Extra costs include costs for medicine, daily care, washing and the wear-and-tear of clothing. They also include expenses for assistive devices, special food or various types of travel. Additionally, they received a grant for home modifications and a car allowance. Lotta said that this makes the financial burden of CF much more manageable.
Lotta shared with us a typical week for Colin: Every day involves a handful of different mediations and inhalers morning and evening. Every day he also does a physical activity, in Sweden the vest is not used and it is believed that intense daily physical activity is a better option. In school he gets extra hours of physical education. ‘It’s a struggle trying to juggle everything – we are a normal family with everyday chores, work and family life but we also have a child with CF”. Lotta is explaining how the hours of medication and exercise has become a part of that everyday life.
Colin’s lung function today is between 94-100%, and right now his lungs are not his main concern. Lotta tells us that they are cautiously happy about this but they know this will not be the case forever. When Colin had pneumonia at the age of eight it dropped to 50% very fast. Colin recovered and Lotta told us it was not until then Colin realized how serious CF really is. But getting Colin to comply with all medication and exercise is very difficult and Lotta said that all she wants is for him to understand that if he is good now when he is 13 years old he will have a better chance at keeping his lung function as high as possible for a long time. ‘Colin thinks he will live until he is 100 years old – he might, but he needs to have respect for his disease and we need new even more powerful drugs”
It was time to hang up the phone with Lotta, we talked for an hour and half and during this time she picked up Colin from practice, drove to a food truck for him to get a pre-dinner French hot dog. Then home to drop him off only to get back in the car and continue with more errands.
“It all works, you have to make it work. I am just happy that my son is living in a different world than I would have if I was the one with CF – if I would have been diagnosed when I was two years old I would not be alive today”.