Category Archives: our Reality

ignorance is the greatest disability

I sometimes meet people who I have not seen for a while  … they often say to me something along those lines … Antoni is doing so well, all is OK now, he is like any other child.

It is not a question about Antoni’s wellbeing. It is a statement. They are glad that the distress is over and we can all live happily now.

I often loose interests in those people and yet another number gets deleted from my …


Antoni in numbers

We have been very quiet on this page recently. However, we kept ourselves busy – during the last 6 months  Antoni was:

  • 4 times admitted to A&E
  • 10 times unwell and seen by GP (does not include times when he is unwell but we were able to cope with it at home)
  • 4 times reviewed by paediatrician
  • 14 times seen by another specialist in major hospital (including ENT, urology, gastroenterology, etc.)
  • 2 times reviewed by local specialists (podiatry, physiotherapy)
  • 1

Mum’s musings

It has been six years since Antoni was born and this blog was started. In the beginning, the blog was to thank those who supported and helped us. We did not have much time for individual contact with each of you, but wanted you to know what is going on.

After six years Antoni does not have the peg anymore, sleeps well through most nights (and so do we); he speaks and communicates his needs (to some extend), he walks, …


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!…


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 …


when we are no longer around

A: Was it Dad’s last birthday today?
Me: Well, I hope not. If it was his last birthday, he would be dead. You do not want Daddy to be dead.
A: No. … but I will die together with Daddy and you …

I often wonder what happens to a person with special needs when their parents are no longer around. What if such a person is not able to live independently?
Does Antoś, who according to the educational psychologist 


not-so-good news

As usual, the bad news arrive in

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groups, This time, within a week, we found out that:
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child labour

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smile vs. laugh

Dad wanted to take a picture of Antoni, so he said: Antoni, smile.
Antoni responded: ha ha ha.

I guess Antoś does not know the difference between ‘smile’ and ‘laugh’.
It was hilarious. Antoś remembered that we both laughed when we heard it, because some time later we were sitting in the kitchen, and I asked him: Antoni, could you smile?
Antoni said ‘ha ha ha’ and laughed out loud at his own joke!

trying to get the bunny in a position for a picture

Health check

Updates on Antoni’s health:

– the latest visit at cardiologist’s confirmed that his PFO has not closed out. PFO is a hole between the two upper chambers of the heart. It is actually quite common, and it is believed to contribute to a fatigue (as the blood with oxygen mixes up with the blood with no oxygen before being pumped out through the veins), or even a stroke (caused by a blood clot finding its way to the brain).We will …


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