We wish to create hope for children and their families affected by MECP2 duplication syndrome. We want to pay our tribute to keep the groundbreaking research within this rare syndrome going. Every little bit can help improve the lives of many children and young adults with MECP2 – and their families as well. We would be so grateful for all the help we can get.
Our son, Hector, is a happy and curious little boy who takes the challenges that life throws at him with a smile and with his head held high. He has an enormous amount of strength, physical as well as mentally, which you see when he meets the world around him – he is a fighter and he doesn’t give up. His will is strong and he struggles for what he wants (for example if he wants to play with something specific). He is full of humor and wit, and he is often found with a quirky smile on his face.
Hector was diagnosed with MECP2 shortly after his first birthday, after a long period filled with worries and incomprehension towards his lack of well being physically and mentally as well as his varying contact with the world around him.
Hector can be just as sensitive and vulnerable as he is happy and robust. This sensitivity and vulnerability are seen through both his physical and mental health. He has an autistic shield as we call it. He wears this shield in periods to protect himself against too many impressions from the world around him. It can be hard to be his parent in these periods because you somehow feel that you lose him and you don’t know when he is “coming back”. It may be small stuff that will push Hector to become more or less autistic, and this is truly where his vulnerability shows. Yet with time we have learned that Hector’s positivity and our good connection with him are just under the surface. In an instance he will look at you, “be back” and send you the biggest smile. This makes all the hard times worth while. Through our life with Hector he has taught us never to take anything for granted and truly appreciate the small and perhaps, to some, insignificant things. Physically, Hector’s sensitivity is related to his immune and airway system among other things. In periods Hector has trouble breathing as he suffers from asthmatic bronchitis and his airways have been permanently damaged due to several infections. The doctors plan to investigate whether Hector’s lungs are also permanently damaged, and an overall examination of his heart is planned to be executed in March.
MECP2 duplication is causing a range of other difficulties for Hector, however we try to focus our energy on fighting for our boy and stay positive about the development and life of Hector. We are trying our best to focus on the abilities and can do’s of him instead of the obstacles we as a family are facing. Hector develops in his own pace and he might not be at the same developmental stage as other children his age but he fights like no other to reach his own milestones. He taught us that even though so many odds are against him he will still try to rise above it – figuratively and literally. He started getting up on his own and walk when we hold his hands. As for all parents, this has been a giant milestone for us and we are extremely proud of our little warrior.
Our deepest wish is to be able to help Hector and other children like him (who have so much potential) to live a longer and more adequate life without so many setbacks.
|Sylvia Johannsen||$50.00||February 19, 2020|
|Anette Christensen||$50.00||February 17, 2020|
|Marie Priergaard Løvberg||$15.00||February 15, 2020|
|Anne Thejl||$50.00||February 15, 2020|
|Nicolai Kehling||$150.00||February 14, 2020|
|Gitte Lykke Ejdrup||$10.00||February 14, 2020|