Liam

Liam is a three-year old boy diagnosed with Tango2 after a long search of studies and tests.When Liam was one-year old he had his first "attack". He had no control over his muscles and was unresponsive. He could no longer make eye contact and nothing seemed to get through to him. We went directly to the doctor and he sent us to the hospital where he saw a neurologist. Many studies and tests followed. Unfortunately this doctor could not tell us what was wrong with Liam. So we went to another hospital where we came in contact with a different neurologist and clinical geneticist. New research was done with no results. Eventually extensive DNA research was completed, and my husband and I had blood testing done as well. After a long wait we got the results. Liam was diagnosed with Tango2 in April 2017. The blood tests showed that my husband and I are both recessive carriers of this genetic disorder and that it is the reason Liam has this disease. We were happy with a diagnosis but also very scared because he was the only one in the Netherlands with this rare disorder. We did not know what to expect in the future. Luckily, in December 2017 we came into contact with other parents through Facebook. There we learned so much and realized how nice it was to be in contact with people who experience the same things we do. Liam has attacks of muscle paralysis with no control over his body. These attacks can last from half an hour to hours. Fortunately these moments are not painful for him. Unfortunately, the attacks of muscle cramps are all over his entire body. Liam begins to shake and becomes stiff. He also has trouble with swallowing and breathing. We have had to call the ambulance several times to have him checked. So far he has no heart failure or blood sugar problems, but we have to keep a close eye on that. There is a chance that these things will happen which scares us. Liam goes to a rehabilitation center twice a week where he receives physiotherapy, occupational therapy and speech therapy. It is helpful and he is learning a lot there. In addition, Liam is currently taking a “Mito Cocktail” which is a group of vitamins to help the body improve energy production in the cells. It seems to help him but it does not take away all the attacks. It would be nice if we could find something through research that would make this condition bearable for all these dear children. Liam is also a very sweet and cheerful three-year old child. He enjoys life in his own beautiful way. Like any three-year old child, he can be naughty and enterprising. He likes to climb and clamber. Nothing is crazy enough. Liam has a sister of almost 9 years, who he absolutely adores. They love dancing and playing together.