Hello, we would like to describe our daughter Kinga. We live in Poland and we are very happy that this website has been existing, and that the site is open also for foreign families.
Our daughter Kinga was born on November 25, 2006. She was tiny, had no appetite and developed more slowly than other babies. There were big difficulties in feeding, but doctors did not introduce the feeding tube. She had the sucking reflex, but did not want to eat and did not gain weight despite our strong efforts. In the first two year she vomited at least once a day, and it stopped as Kinga started to walk. The syndrome was initially suspected at the age of 8 months, but the laboratory tests (FISH) confirmed it a year later. However, we do not know the exact size of the deletion.
Kinga was able to sit independently when she was 1 year and 9 months, started to grasp toys at the age of 1 year and three months, and began to walk at the age of 2 years and 11 months. Now she’s able to walk and run, but only starts to hop. She is still not good at fine hand movements and tasks, and she is not very skilled in her motor – visual coordination. She has glasses prescribed, as she has squint. However it does not work as she doesn’t want to wear them. Probably she’s going to have an eye surgery. She is tiny – weighs 11.5 kilogrammes and is 90 centimetres tall. Kinga can speak whole, meaningful sentences, but can’t speak loudly, and sometimes the words are difficult to understand. The first strong seizure occurred when she was 18 months, and then the attacks were taking place about once a month. After a year without seizures she had an attack this April. Kinga started to control and inform about her physiological needs at the age of 3.5 years. There are still problems at nights. Kinga drinks very little, and has a renal reflux. We do not know about other abnormalities.
She is very cheerful, social and good – tempered, but reacts with strong, difficult to stop, cry and fear to low, male voices and voices from a microphone. It is aggravating and we do not have an idea how to cope with this. Kinga likes contacts, plays and talks with adults, but still has difficulties with initiating contacts with peers.
We are very open for the correspondence, and are looking forward to hearing from other families.
Iwona and Maciek
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Welcome to the blog! I have found so much useful information here and it’s really kept me positive since our daughter (Ellye) was diagnosed a few months ago. We live in Italy (even though I’m American) and the people we’ve been in contact with here just don’t have the same mentality, so it’s easy to feel disconnected. Kinga is absolutely beautiful and doing really well. It’s nice to hear her speech is coming along so well. This is something we’re really starting to focus on as we have seen it’s one of the biggest (out of many) obstacles our children face. “Never give up” has become our motto as well. We know Ellye will do so much and it’s so important to believe and take everything else with a grain of salt. I’m looking forward to hearing more about Kinga!
I’m so glad you found this website. It’s a great resource for information and encouragement. It sounds like Kinga is doing quite well with her development. Walking and running and talking too! I look forward to hearing more from you.
Hi, Kinga sounds like she’s doing AWESOME! And she is beautiful!! Our daughter, Emma, is only about 3 weeks younger than Kinga. She was born December 18, 2006! Thanks for sharing about her and I look forward to hearing more!!
Hi Kinga! Pleased to zapoznaem.Imash you Facebook profile? Balgariya.Moyat I’m a Facebook-Lena Stoicheva.Molya find me.Moyat son is 12 years.
Witaj Ivona.Izvinyavay nazwę mylona z córką jest ti.Kinga prekrasna.Moyat syn ma 12 lat, ale jest o wiele bardziej do tyłu w m razvitieg.to si.Az Balgariya.Shte “Miło Cię kontakt.Ako Facebook profil uważam, google tłumacz molya.Izpolzvam Przepraszam, jeśli istnieją nieścisłości.
Hello,
thank you so much for all your comments and a very warm welcome. We keep reading the posts and are learning a lot from them. Especially, we are interested in the feeding procedures and diet you are following for your children. We have realised that we still do not know much about opportunities and choices in this matter. We will continue sharing our experiencies and be in touch with you.
Iwona, Maciek
Kinga is super cute 🙂 So glad you found this blog. Sounds like she is doing really well.
Kinga is adorable! Your story is very much like mine with my daughter Ramona. Ramona is a little older than Kinga but they sound very similar in their abilities and challenges. Ramona has renal reflux too but 18 months ago it was corrected with a gel injection into both ureters. I can’t wait to hear more about sweet Kinga.
Caitlin, mom to Ramona (08/31/2005)
Kinga is a beautiful, beautiful little girl!! She is doing great! I can’t wait to see more pictures 🙂
All the best,
She seems very bright….and man, is she cute!!!