BiographyMichal was born as a healthy boy. And nothing at all foreshadowed what was to happen in a few years.
Everything was fine until almost his 4th birthday. Michal walked, ran, even rode a scooter. He spoke Polish and English numbers and colours. Just before his fourth birthday, he had his first epileptic attack in kindergarten, followed by several more.
He was sent for an EEG and on his 4th birthday and we heard that he had childhood epilepsy We were given medicines and things were supposed to get better because we could finally live with epilepsy. But Michal was not there, his condition was getting worse, there were days when he had up to 100 epileptic seizures a day. Our doctor sent us to another hospital in Birmingham, where they did tests, added another drug, and it was as if a miracle happened. Michal did not fall while walking, spoke clearly and did not have epileptic seizures. Unfortunately, they called us urgently to the hospital and then we heard this terrible diagnosis. I can still hear the doctor's words to this day.
"Your son has the fatal Battens cln2 disease." It was June, Michal was still walking normally, but sometimes he needed help. At that time, the NHS and NICE were making decisions on whether to fund the treatment of children like Michal. At the end of the holidays, consent was given for treatment. But it wasn't over yet for us. We had to undergo consultations and meet the criteria for Michal to be treated.
In September, we had our consultation at GOSH. Our son also got 2 points out of 6 there. And the doctor agreed to treatment. On the last day of October, he underwent surgery to insert a special port into his brain through which a drug (brineura) will be administered every two weeks to slow down the progression of the disease. And so our first infusion was on November 13, 2019. Since then our trip every two weeks continues to this day.
For the first almost 4 years we went to London GOSH. In June 2023, the hospital in London performed a transfer to Birmingham so that we could be closer to home.
For now, Michal is still smiling. The disease took away his ability to walk and talk. Sometimes he will only say NANA (his dog's name). We also know that Michal is losing his eyesight and can see up to about a metre away.
He is fed by the NG tube although we know that we will have to go back to fit a PEG.
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