Primordial dwarfism or primordial dwarfism is a type of dwarfism (dwarfism) in which the child's limbs, head and body are formed in the womb of a smaller size than ordinary people. At the same time, their body looks proportional, but like a puppet. When describing this type of dwarf, many people compare them to dolls.
These babies are born tiny and grow very slowly during their life, mostly not reaching a height and a meter. There are only about 200 such children in the world. Every year in Liverpool there is a special convention for children with primordial dwarfism. Children from all over the world come to this meeting, including from Australia, Canada, Colombia and Russia.
Last year, 35 people attended a meeting organized by the Walking With Giants Foundation. Among them is 4-year-old Emma van der Linder, pictured below, sitting in the arms of Judith's mother and representing a group from the Netherlands. 4-year-old Emma is no bigger than a baby in size.
Emma and her father Robert
At the meeting, children play with each other, and their parents communicate with each other, trying to learn something new about the illness of their children and get advice on how to properly raise and educate such an unusual child. For some parents, such a meeting was the first where they could see other children with the syndrome of primordial dwarfism and it was difficult for them to contain their emotions.
Such conventions for children with this rare form of dwarfism in Liverpool have been going on for nine years, they were created under the initiative of the spouses Sue and John Connerty, who live in Liverpool. Their son Alex, now 10 years old, was born with original dwarfism. When he was little. his parents took him with them to Seattle, where the festival of little people was held, after which the couple decided to create something similar in their hometown.
- Alex was very lonely and all the time looking for someone who would be like him, would be as small, says Sue. - And I also asked different questions, mostly “Why did this happen to me”? and "What should I do about it, who should I talk to about it?"
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After meeting the Connerties with other parents, it became much easier for them, as if a heavy load had fallen from their shoulders.
In the photo, three-year-old Faith King and her mother Janice from Essex (UK).
In this photo, Sue Connerty and her son Alex are in the back row, Lucy Johnson, five, from Lancashire, five-year-old Nevio Creoi from Croatia, Leo Lagana, 15, from Australia, and Charlotte Garside, eight, from Yorkshire, are in the front row. Charlotte previously became famous throughout the world as the smallest girl in the world. Her height at the age of 5 was 60 cm, and her weight was only 3.5 kg.
Pauline Lagana and her 15-year-old son Leo are coming to the convention from New South Wales in Australia for the second consecutive year. Leo has an initial Type 2 dwarfism and, according to his mother, the time he spends with other children like him is priceless.
- I remember how Leo first met children here who were as small as he was. It was as if he had met his distant relatives.
In addition to growth problems, children with initial dwarfism can have many other problems, including learning difficulties, heart and liver problems.
Tiny Charlotte Garside is having trouble absorbing food. In early childhood, she was fed a special formula through a thin tube, since her very small esophagus did not accept normal food. Now that she's older, she can eat normal foods like sandwiches, but she's often nauseous and still needs a special mixture regularly.
At these meetings, parents receive valuable advice on various diseases in their children and recommend each other experienced doctors who can help with this or that problem.
“Before these meetings, many doctors studied primordial dwarfism from a single brochure published 25 years ago. Since then, we have helped make many new discoveries about this disease and there have been many different studies in this area.