Category Archives: Play

trip to the beach

2017-05-29_Bucks Mill_147

Cooking with Claudio

Antos loves to watch programs about cooking, and today he had the opportunity to cook with a real cook! Claudio Bincoletto invited him to make pasta together.Amazing experience. When cooking was done, we ha an opportunity to grab a bite – pasta with mushrooms tasted delicious :)

After the show we received feedback on Antoni’s performance. It was so nice to hear those words: Antoni has demonstrated initiative, ability and self control.

Thank you Claudio for this opportunity.

Highlights from the therapy camp

Greg Terka

On Saturday, 23rd July, our friend Greg Terka sets off for his longest yet motorcycle trip: London – Siberia.

He is going to ride across Europe, Russia, Kazakhstan and Mongolia. He plans to complete the 20,000 km (12,500 miles) trip in 2 months.

During his journey Greg wants to support Antoni and raise awareness of other kids with Kabuki Syndrome.

Greg is an extremely positive man with a big heart. We wish him a safe and exciting trip!…

independence, already?

On Wednesday afternoon I was standing by the side of the road, impatiently waiting for the arrival of the school bus … I was envisioning Antoni running straight into my arms telling how much he has missed me … but instead I received casual “hello” and we proceeded to review the content of his backpack … what a disappointment … mom’s services are no longer required?

Antoni had been away for 3 days on school residential trip. He is the …

weekend away

We did something that does not happen often in our household as holiday is usually allocated to therapy in Poland. We took advantage of the long May weekend to go to the seaside. Rather spontaneously we rented a cottage in Margate and arrived there on Saturday.

The weather was ok, not very warm, but at least sunny. The cottage turned out to be a beautiful little gem in the quiet part of Margate, close to a nice beach and far …

Autumn Therapy

Another therapy camp had concluded and Antoni returned home with his dad. Antoni stayed infection-free this time, although the weather turned really autumn-y towards the end of the stay. We did not have time for the walks in the forest, as the day was filled with therapies (5.5hrs of therapy daily). Both weekends were family events; first visiting Grandma Gienia and the family, and then a visit by Grandma Teresa and the uncles. During the therapy sessions we worked mainly …

Do you believe in magic?

Antoni and mum had the most magical experience ever … yes, that is us in one of those Black Cabs just few days

ago and yes, M25 was closed and there was no one else on the motorway except 100 black cabs, medical teams, ambulances, police and French gendarmerie travelling to Disneyland! Click on this link to see the convoy on …

Weekend in Ascot

We spent the weekend at Sunningdale Park, Ascot, attending a meting of families of deaf children with additional complex needs (aged 0-6 years), courtesy of NDCS (National Deaf Children’s Society). We attended lectures and presentations by experts (topics including communication, early learning, technology, resources and services), discussed our experiences and

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Thank you Kabuki UK

Another Kabuki Family Day has come and gone. Thank you Kabuki UK for organizing this wonderful get together!

It was a day full of laughter and enjoyment. We met some old friends, and made new ones as well. We had an opportunity to talk freely about achievements and worries, in an atmosphere of openness and acceptance. Antoni, as always, had a great time. He met a new friend who was very patient with him climbing on all the heavy machinery …

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