Michałek Markowski

It has been almost 4 months since Michałek was diagnosed.

For the past 3 months, we have been talking to the Cornell Medical College in New York, but we still haven’t received any formal decision about Michałek’s participation in the experimental therapy.

We keep fighting for our little son, we’re doing whatever we can, but the disease doesn’t give up and keeps trying to take him away from us.

Despite ongoing intensive rehabilitation, acupuncture, and meetings with an educationalist and a speech therapist, we’ve noticed a turn for the worse. The symptoms started to appear at night as well, making it difficult for Michaś to sleep.

I keep telling my sunshine that he must fight, that he cannot give up, because he needs to get on a plane to the US for his therapy. When he hears that, he smiles so beautifully …

“Nothing brings more pain than dwelling on past moments, especially if they were happy moments.” – Danielle Steel

Zuzia and Michaś dancing

Michaś was 2 years old then.

I would give anything to see him dance again!

We received the genetic test results, which showed that Michaś is affected with the most common mutation of ceroid lipofuscinosis gene and what is most important, HE MEETS ONE OF THE MAIN ELIGIBILITY CRITERIA FOR THE TREATEMENT IN NEW YORK!

We sent the results to Weill Cornell Medical College and we’re waiting for their reply. We hope that Michaś will get a chance to be treated there.

We also managed to get him a verticalizer and he will be able to use it next week. The good times when he was carried like a baby are over.

We also signed an agreement with a Polish foundation “Zdążyć z pomocą”. We really hope that by the end of January we’ll have received the KRS number for donations of 1% of personal income tax.

I would like to ask anyone who’s willing to donate their 1% for just a bit more of understanding and patience.  We are really doing everything we can to finalize the process. As far as we know, it will take about 3 more weeks.

Also, we’d like to thank everyone who has helped Michaś so far.

When we heard the diagnosis, our world fell apart. Now, we make the most out of every day we spend with our son and try to do everything to make him smile as often as possible.

Our main goal right now is to get Michałek into an experimental treatment in New York. We hope that the scientists from Weill Cornell Meical College in New York will be able to stop the progression of the disease.

We are now doing genetic tests in MEDGEN in Warsaw. The results will determine if Michaś meets one of the eligibility criteria, which is the right genotype of ceroid lipofuscinosis. Another important criterion is physical and mental state of the child, which is why Michałek has very little time. Every day counts. It’s ironic: Michałek is affected by a terrible disease, and now we pray that he has that one out of five genotypes of ceroid lipofuscinosis, so he can get a chance for the treatment. I’m not going to mention the cost of that treatment. Everyone knows, how expensive medical care is in Poland, let alone in the US.

We do not sit idly by while we’re waiting for the test results. We are taking care of his rehabilitation, we’re getting him rehabilitation equipment – a verticalizer, which will make standing and walking easier for him, as well as a special feeding chair.

The only thing we can do for Michaś today is to give him as much love as we can and make him so happy that a smile never disappears from his cute little face. I would kiss him to death if I could!

Hello,

This is our first entry on this website.

We are going to post information about our son, Michaś, who was diagnosed with Batten disease.