A DISEASE WHICH TRY TO TAKE AWAY OUR CHILD…
Matty (Mateuszek) decided to be born prematurely at 32 weeks weighing only 1340 grams. Fortunately we were already in the hospital at that time. In the 8th minute after birth he was intubated as he didn’t have enough strength to breathe by himself. We wanted to believe that all would be just fine as babies weighing as little as 500 grams are saved.
From the beginning, the doctors were saying something was not right, that Matty was too limp, that neither the traumatic birth or pneumonia explained it. We tried to enjoy every day. Matty fought bravely each day. After two weeks he started to swell up and nobody knew why. He was getting bigger from one day to the next. The doctors told us he was getting the ultimate medication, that there was nothing more, and it was best to be prepared for the worst if they didn’t work. They didn’t! Slowly all his organs were shutting down. Despite being hooked up to a respirator, he was struggling to breathe.
At the last minute he was transported to CZD. There the doctors fought bravely for his life. The first 24 hours were critical. On arrival there he weighed 2200 grams, the next day after the swelling had gone down, he weighed only 1500 grams.
They cured him from pneumonia and he was getting stronger. Unfortunately he was still very limp and multiple attempts to disconnect the respirator were unsuccessful. When the due date of Matty’s birth had gone, attempts began to find the reason for his limpness.
The doctors did an MRI of his head but it didn’t show any oddities. It was very good news, because everyone wants to know their child is healthy. For us, however, a completely healthy brain suggested a serious neuromuscular condition. Then they did a biopsy of the muscle. Under general anaesthesia, they took a muscle sample from his thigh. After two weeks of uncertainty, result – a type of myopathy.
One of the rarest genetic diseases. One of the toughest and with the worst prognosis. Only males fall ill. Females are carriers. In Poland there are currently only 4 other boys living with this disease. 80% of those affected don’t live past their 1st birthday. Genetic testing didn’t give us a ray of hope, because it turned out that his gene isn’t damaged, he doesn’t have it at all. This means the prognosis is even worse.
After the diagnosis we got sent back to our first hospital. Matty was doing really well, he was healthy and was gaining weight, to a point. He then started regurgitating and stopped digesting food. The doctors were saying the illness was taking him away, that it was time to let him go. This lasted two weeks, Matty was shrinking.
I got stubborn that it wasn’t the time yet. I found another boy with the same disease and after talking to his mum it turned out that they had the same symptoms. I told the doctors but they said that wasn’t it. Luckily they did a scan which confirmed my diagnosis. The next day he was transferred to CZD for an emergency operation. Now Matty is fed straight into his stomach. He then needed another operation for antireflux, and as they were giving us no hope that he would breathe unaided we agreed to tracheotomy. We struggled to recover from this one, all three of us.
After the wide-spread wounds healed we were sent back to our original hospital with a plan to grow to 5kg in weight, return to CZD for training and then go home. We recall this period with a smile, weeks were going by counting the grams. It was so close and then another occurrence of pneumonia with odd changes in his lungs so we were back at CZD where we stayed for a month, instead of going home.
There they connected him to a home respirator but he was choking. After a series of tests, it transpired that he had an overgrown thymus gland and a non-
functioning middle lobe of the right lung as well as the Gooda condition (decreased immunity). It was decided that the lobe of the lung and the thymus gland should be removed.
He bravely went through the longest operation yet which lasted over six hours and was the most serious of all.
After 7 months of fighting for each day, success! We’re home!!! Our life is filled with specialist appointments and physiotherapy. Our dream is to get Matty going to the maximum of his capabilities and beyond. We have to be very careful as any illness is life threatening for our son.
The cost of physio and neuro-therapy, specialist equipment is huge and we can’t afford it all. Hence why we ask for your support in this fight.
Currently we are raising funds for:
– physiotherapy to enable Matty to breathe more easily and fight off infections. We are hoping that it will also enable him to sit and hold his head unaided.
– therapy to teach him how to swollow. Eating a 
meal is a distant dream, but at the minute he chokes on his own saliva. Then learning to speak. He has never cried like other children. He doesn’t make any noises
It would be best for him to have physio daily. At the minute it’s three times a week with a specialist and with us the rest of the week. Despite our efforts we are not as capable as our specialist Ania. It has been tough to find the other specialist, so we are only starting that therapy now. We are hoping she will be with us three times a week. The cost of both of these therapies is 1400PLN monthly
– we also need a specialist pushchair for Matty. Because he’s limp, wrong posture can cause more problems with the spine. The cost of this pushchair is between 12000 to 14000 PLN. He would love to be able to go out for walks. Despite his disease he is a normal and very curious child and wants to make up the time he has spent in hospitals.
You can help Matty by making payment on the account:
Fundacja Pomocy Dzieciom i Osobom Chorym “Kawałek Nieba”
PL31109028350000000121731374
swift code: WBKPPLPP
Bank Zachodni WBK
Title: “1138 Help for Mateusz Mizgala”
You can also help Matty by DOTPAY:
