Węglokoks S.A.

 


[Tuesday, October 7, 2008]


Trachea tube change

Finally, the change of tracheotomy tube was done as we wished – smoothly. We did not have problems to get the ambulance to get Peter  to the hospital. We are grateful for the help given by Mrs. Halina from NHF Claims Department on our request. (It was a reaction to my letter regarding the difficulties I had when I wanted to transport Peter to the hospital surgery warden for the tube change sent to NHF two weeks ago.)

Yesterday, the new tube was inserted by MD Cz. From Chorzow Hospital Pediatric Center without difficulties and almost painless for Peter. He was brave as usual, nevertheless red spots on his neck and chicks indicated higher than usual level of stress. Most important is that our Peter the King was back again in his premises within 2,5 hours.

One small detail – again still another tube was used, it has other than last time, even smaller holes in stabilizer – and especially ordered bands to stabilize the tube do not fit. We can use a ribbon but it hurts Peter’s neck. There always must be something wrong, but lets maintain the positive general impression. Especially if we remember that last time we reached the hospital only thanks to generosity of one of aid transportation companies from Katowice.

None of the five other transportation companies agreed to transport Peter from home to the hospital.

Why?

- as per the law Peter is entitled to a commercial ambulance, i.e. an ambulance without medical doctors and equipment for emergency situations. We already got used to many strange regulations, however, each ambulance personnel refused to transport Peter as soon as they fund out that he requires a respiratory aid. Although we assured them that we may support our own respirator, suction machine, and a doctor – anesthesiologist. They all said that 35 km is too risky for his life.

- Peter is NOT entitled to ER ambulance as it is not an emergency case. Anyway, most of ER ambulances are not adjusted to transport small kids.

- Peter is NOT entitled to „N” ambulance as he is too old already. “N” ambulance is for babies before 28 days of age. Some doctors expand this rule but by few days only.

Greetings,
Peter’s Dad.     

 

[Sunday,October 5th 2008]

Tasting food

Because of many house chore duties we sometimes forget that the time is flowing. We also seem to forget that Peter is already 14 months old, his stomach and his taste receptors are fine and he is no longer a small baby, hence we should take care not only of his eating hours and amount of calories eaten, although it all really matters for children with SMA, but also about his taste pleasures.

Most of food is transferred by a special pipe, which does not allow him to take pleasure from tastes. I am sure that he must have wondered many times what is the nice smell and why everybody’s eating but him?

It always gives me cripples when I think about that. We always watch Peter through his disease, but apart from little movement possibilities our Peter the King is a normal child and he should try everything that goes into his stomach!

Therefore we decided yesterday to change the situation and let him feel the difference. At the beginning we gave him a piece of a peach – you can see it on the photograph. It gave him a real pleasure to bite into this piece! He also got a little piece of pizza bread – but it did not interest him too much. A little drop of lemon caused a flow saliva and we stopped flavor experiments for a while. But the best was a bite of chocolate

Today we are preparing for another trip to the hospital. Next tracheotomy tube change. I hope that his being in a hospital will be short and he will come back home soon.

Greetings

Peter’s Dad

 

 

 

[Thursday,October 2nd 2008]

We got rid of infection

Peter finally got rid of infection.

For a few days after we came back home from the hospital where his tracheostomy tube was changed we lived on a verge – whether to take Peter back to the hospital or stay at home and it was all because of running nose.

Normally we would not panic, but in case of children with SMA a small infection may cause serious trouble, including pneumonia which would be treated in ICU unit for many long weeks. We’ve already experienced that twice

That is why it is very difficult to tell when is the right moment to take him to the hospital. The right thing is to test blood for CRP – it will tell whether it is necessary to take the child to the hospital. This test must be done quickly because each hour is important. Here, we would like to thank the ladies from laboratory in Klimontow hospital, we had blood test results in 2 hours (including transportation, taking the blood, and the test itself – perfect!) The test excluded the necessity to go to the hospital immediately.

Infection for Peter means:

-         MD visits in order to hear him (we are not able to do this correctly, but we are learning)
-         Blood tests
-         Everyday patting on his back
-         Drainage
-         Frequent position changes
-         Sucking
-         Fluid control

We have it already done, thanks God.
10 days have passed and Peter is fine already, He is smiling again and after the tube change (he new one is without a sealing) h is making sounds. 
He sounds like a small dolphin or a quite big whale. He is making progress everyday sometimes short sound last longer with a different tone.

It makes him happy and it makes his sister happy. She is showing his a correct pronunciation. It is rather funny, but thanks to such teaching Peter started to modulate the sounds, It does not sound like the bubbling before the tracheostomy, but yet it is another than eye way of contact.

For Peter and us it is important because it allows us to see the everyday in a different manner.

Greetings

Peter’s Dad.


[Monday, September  29th  2008]


Peter the King is coming back to his kingdom!

I haven’t written for  long time but we were overwhelmed by taking care of Peter after he came back from the hospital.
Although we were terrified, more because we are aware that we are responsible for his health, we were full of worries whether we manage in house conditions, the decision was: we are taking Peter home.

Finally, after all the hustle related with the house care contract signing, finding a nurse and a doctor, qualified enough for NHF, who will support us in taking care for Peter at home, we are back home. It is August 26, 2008.
We believe that this decision requires persistence, 100% commitment, and dealing with stress everyday. It is a pity that so small number of doctors can understand that.

Our everyday life looks a little like on ICU unitJ however it is rather more domestic. It is the time for drastic organizational changes, all dedicated to Peter. It is not so easy because we have our 5 year old daughter Paulina, who also requires love and attentione. We feared her reaction to Peter’s new “toys” (respirator, etc.) we were not sure if she would able to accept new situation at home.

After two months with her grandmother, she was very happy to come back home, and she was looking forward to seeing her little bellowed brother.

Although we were trying to introduce the new situation to her in advance, there was a moment of silence when she saw him. Most probably she did not expect a tube sticking out of his throat, but after a few second she hugged him, smiled, and kissed him.Peter was also happy, he was gazing at her. Finally, we were a family together, our emotions dropped, and we were full of hope that we would able to take the challenge, we would manage, and every day would be better.

It is amazing how Peter feels safe at home. We call him Peter the King. He is happy and joyful. He is interested in each and every  toy. Recently, he really enjoyed playing with a big and noisy chopper. I suspect if he had more strength in his hands he would have knocked it down. Until now, the chopper is still fine. I hope that he will be able to knock it down sometime.

Only those who struggle for their bellowed child to survive know how much a carefree smile of the child means whereas they are trying to fight the pain, fear, and lack of possibility to manifest the dissatisfaction.
We are more and more aware that the equipment controlling Peter’s life parameters is essential for our home peace, it indicates if everything is OK, smile, happiness, pain and infection.

For us, it is crucial that the fact that Peter is at home reduces the indicators to the correct level.

Greetings ,
Peter’s Dad.


[Sunday, September 28, 2008]

Petition to Polish Prime minister … to live a worthy life in the future.

Each parent who has to take care over a sick child 24 hours 7 days a week changes drastically their family life.
It requires sacrifices and new look at everyday issues, they sometimes become a barrier difficult to cross.

Good logistics is not always enough.

Care over a sick child who is not able to live without help engages totally at least one of the parent, and he/she has to quit work. And, it means that it is difficult to improve the family status, earning a good retirement benefit, and provide a worthy life for a sick child in the future.

The easiest thing would be to transfer the care over a sick child to the state institutions, which is not a rare case in Poland. However, for most of parents their love for their child, the will to provide a correct psychical development, saving additional pain, and responsibility for another being, is enough to take decision and quit the professional career.

Identifying ourselves with parents of disabled children we support the initiative to collect signatures under the petition to Polish Prime minister in the subject of creating rules defining a financial support for families taking care over disabled people, and to secure the parents who resigned from work to take care over disabled children in their old age.

Although the petition is a claim against the State – its main purpose is to provide a worthy life for children who cannot exist independently.

You can support the petition here by clicking I support the initiative, I am FOR.

To validate your vote you will have to give your name and surname, and e-mail to which a confirmation request will be sent.

We are thankful for each vote.

Edyta and  Tomek Waluga /Peter’s parents/

 

[Tuesday, August 12, 2008]

The real… „HELP”

Peter is coming home soon.

This is the happiest news for us since the day he had to stay in a hospital.
He only has to fight the infection he caught in a hospital while he was waiting to be signed up for home mechanical ventilation program and he can come home to his favorite toys.
Two month of our efforts to be qualified to the program ended successfully, mainly due to the help of dr. Suchanke from HELP Center in Poznan. They offered their help no matter whether NHF signs up the individual contract  or not – logically and humanitarian ( just to remind you – the participation in home mechanical ventilation program was the condition for Peter to come back home from hospital)

I think that such support is expected from the doctors by parents of children suffering from SMA.

Today we know that Wielkopolski NHF agreed to sign the contract with HELP to take care for Peter – so “Helpers”, welcome!

Greetings,

Peter’s Dad.

 

[Monday, August 11, 2008]

Peter’s first birthday

Peter’s one on July 26, 2008. He got cute toys and a music-playing birthday card – each sound makes him smile :)
Other birthday presents were not as important as this card – a red car and a teddy bear on the music-playing card was the best.
He has grown up so much – its time for disco dancing :)
He has beautiful curls, 4 teeth – it is not the same baby boy as he used to be. Nurses who take care of him keep saying that he likes the blond nurses the most, he keeps looking with his blue eyes at them.
Well.. he took after me :)

We know that Peter is a brave young boy, his will to live and explore is very strong. This “joyful power” makes every day a new chance in his struggle with the disease.

Peter’s Dad

 

[Friday, July 25, 2008]

Conctract bubble……..

You know what… I feel helpless, a contract with Dom Sue Ryder in Bydgoszcz burst like a bubble.
At present we are… hmm in fact , until yesterday we were close to finalize a contract with Dom Sue Ryder in Bydgoszcz (practically, everything was agreed Peter would be back at home in two weeks) unfortunately, Kujawsko-Pomoski National Health Fund denied the application to finance Peter’s health care in a way practiced by Silesian NHF,  i.e. within a program of the migration of insured patients.
As Mr. Kiełbasiński from Kujawsko-Pomoski National Health Fund nicely said “it’s because of formal and legal reasons”, or something like that. Supposedly he is not able to control the health care that Dom Sue Ryder is providing for our child here in Silesia. It is an absurd. The question is – how then the same NHF controls the health care children from Mazowieckie, Małopolskie, Dolnośląskie districts get?

Furthermore, we were not included in the distribution list on the denial letter addressed to Silesia NHF hence for more than a week we, and the Dom Sue Ryder, did not know about the denial. Which is a pity, because instead of wasting time for looking for a doctor and a nurse with qualifications required by the Health Ministry we could have spent this time with Peter.
There is one rule for such contracts, the house health care should be provided by the doctor or nurse coming from the child’s place of living – in our case- Dąbrowa Górnicza. So tell me, why is the necessity of control by Kujawsko-Pomoski National Health Fund? Is the control of Silesian NHF not enough???

This denial is very harmful for us, as we did our best to:
- actually conclude the contract
- avoid waiting for ICU in Warsaw for few months (I would like to inform you that it is the only clinic contracted to provide respirator for house health care for children in our district.
- avoid the necessity to drive over 300 km to Warsaw only to be qualified to the program
- avoid the big stress related with the hospital change for Peter
- and finally, avoid further infections which he can catch in ICU by meeting other children (this is impossible to avoid in a hospital unit) while waiting to qualify to the program.

Dom Sue Ryder doctors come and visit their little patients in their place of living. They have the necessary equipment and they are available from day one. They take care of 14 children with SMA in Poland (in many different districts of Poland) – then why, in spite of the engagement of us, parents, and the doctors children from Silesia are denied to access the program??
Greetings to office clerks from Kujawsko-Pomoski National Health Fund … ups, I forgot that they actually do not read such websites or blogs about children. It is better not to know what sick and helpless children expect.

On Monday July 28, 2008 I hope to meet a member of parliament Ms Beata Małecka – Libera. I believe that we will find a solution beneficial for Peter. She already helped us to change the bureaucracy. We will see….

Good news: a periodical „Rynek Zdrowia” – one of top five titles for medical environment is very interested in our “Crumbs of life”, so we may say that our actions are speeding up!

All the impatient: let know that Fil and Mat were 39th which is great – congratulations!
You can read about 7th stage of Transalp tonight on Fil’s blog. Enjoy!

Kindests regards,

Peter’s Dad.

 

[Tuesday, July 22, 2008]

Help wanted …

Yes, it is not a joke – we are looking for a doctor with second degree specialization in anesthetic or pediatric (the newest requirement by Health Ministry) from Dabrowa Gornicza area, who would like to take care of our Peter at home within the NHF contract.   /mobile  +48 608 689 796/

One week ago we thought that the most difficult for us would be signing an individual contract by Silesian NHF with Dom Sue Ryder from Bydgoszcz – a center which provides health care for children who breath by the means of respirator at home – within the NHF program. Signing Peter up for such program is his only chance to come back home again.

We strived so much to be able to participate in this program and here it is – we managed!. 

We have the consent to cover Peter with DOM SUE RYDER  health care – and we are grateful to Silesian NHF employees who contributed to conclude this contract. However, if we want Peter to come back home we will still need professional care and adequate conditions at home. We already have a great nurse and a great therapist. They fulfill all the Health Ministry requirements.  There is a slight problem with finding a doctor who will be paid by NHF (1,5 h a week but he should be available 24/7). The benefits offered to doctors for their work is not interesting enough for a doctor (who fulfils NHF requirements) to sigh up a contract. It is also interesting, that a doctor with a second degree specialization in neurology or neonatology is not qualified enough, according to Health Ministry, to take care for Peter at home (it’s a pity because such specialists already agreed to take care of Peter). Furthermore, they already know Peter, and we trust them. It is important that the doctor gets involved in treating Peter. We count on that.

I think that Peter is the first child from our district who will be able to use another health centre than the Child’s Health Centre in Warsaw. I hope it will be a precedence for other children from Silesia, who have to drive over 300 km to Warsaw only to be qualified to the program. Some children wait for months for a bed in ICU in the Child’s Health Centre in Warsaw whereas other centers in Poland offer their help and equipment on the spot. And, important is that the doctors come and see little patients at home in order to qualify him to the program (teach parents the everyday care, how to handle respirator, how to change the tracheotomy pipe, how to use the ambu bag. It may be a small difference for somebody, but a huge difference for a small child who is stressed by each change of staying.  

Regards,

Peter’s Dad

 

[Sunday, July 20,2008]

Multi phase....race

Fil and Mat – today they are riding up the hill again
I know that Transalp is not only a challenge for them. It is also a great adventure – plenty of unforgettable memories and sightseeing./You can read about 2nd stage of the race on Filip’s blog tonight/

Maybe one day Peter will be able to experience such an adventure. Maybe he will pick stones for other children…

Stage II
Peter at home – the period between the diagnosis in November, and February this year. This is the time spent with Peter, however not only playing. It is the time of learning how to correctly take care of Peter, and the time of systematic rehabilitation few times a day. Apart from that, Peter was practicing one hour twice a week with a specialist, with a smile on his face. We also noticed a certain improvement of Peter’s motoric movement. We were hopeful.       

Stage III
Peter at hospital – at the end of February Peter caught a serious infection. He was finally taken on ICU (Intensive Care Unit) in Sosnowiec-Klimontów Hospital in a serious condition, bilateral pneumonia. (Bilateral pneumonia can develop very fast in case of children suffering from SMA). I deliberately wrote “finally” because Peter was waiting for 5 hours, suffocating, for “N” ambulance in Pediatrics in Dabrowa Gornicza. The doctors were not able to provide adequate care until the specific ambulance arrived.

These 5 hours I can describe as a nightmare - deteriorating bodily functions, dyspnoea and helpless waiting for an ambulance. Doctors’ bogosity (this  is how an employee of ZTS NFZ Śląski described) who were not able to make the special ambulance come to Hospital in Dabrowa. As a result a regular ambulance came and the medics refused to take Peter because he was under 6 years old. We were thrown away from the doctors room because after 3 hours of waiting we asked about the ambulance. This is the reality of Pediatrics in Dabrowa. So help me never, ever, due to district division, be made to use this Pediatrics unit again.
Thanks to the medics team from “N” ambulance, and the doctors and nurses from ICU in Sosnowiec-Klimontów, today I can write about a smile on Peter’s face.
Thank you once more.

Stage IV
Home again. Peter, after one month on ICU came back home, breathing on his own. He was happy and cheerful. There were even more things to do around Peter, because he got used to eating by the means of a pipe. It was also necessary to check his saturation. And, a very important thing, he started babbling. His sister Paulina was very helpful in this. We may say that they tried to talk to each other. One day, when Peter was trying to find another sound he made a funny noise Paulina said: Peter, but I can’t make such noise! And we all laughed.

Stage V
Back to hospital. And again, the pneumonia came back, without any signs. Just like that – without fever, good saturation. And Peter came back to ICU in Sosnowiec-Klimontów again. This time, after two weeks of his staying in the hospital we had to make decision about tracheotomy. It was a difficult decision as it may mean his short or long life unless a cure is found for children with SMA. Well, after doctors suggestions, and taking in account Peters wellbeing, we agreed (FYI: in the USA and Western Europe breath of 75% of children with SMA is supported by non-invasive methods whereas in Poland 75% are after tracheotomy, and everybody says that we are in Europe..).

At present Peter is after tracheotomy, and he is very brave. He is waiting to be qualified in home respiratory program. It is the only way for him to leave the hospital and come back home. We want this so much.

I would like to thank to all the persons who help us to break the barriers of Polish reality.

Peter’s Dad.

 

 

[Saturday, Juny 19, 2008]

Multi … phase race

It has biegun. Fil and Mat has started the Transalp race, they struggle with tiredness and time. We keep our fingers crossed. We already know that they picked the first symbolic stone- which is excellent! You will be able to read about that soon on Filip’s bolg. 

Peter  also struggles with time, in his case it runs very fast.

Quite often, before Peter falls asleep, I hum a song for him „ here it goes, the fast train, it goes so fast, oh.. where it will take Peter today” – the lyrics of this song came into our lives and it shows our worries and hopes for the future. Nine months have passed already since the diagnosis was made. We experienced many ups and downs during this period. Just like in the race, several phases of lost chances, fighting till the end, searching for a right way, watching carefully in order not to miss anything which, once lost, could be difficult to recover.

Stage Isearching the cure for SMA– after diagnosis we decided to ask Polish neuromuscular authorities. They did not help too much, we only heard that „they don’t know how parents of children with SMA have strength to take care of them”. Only dr. Jędrzejowska, a scientist from Warsaw, responded to my all questions related with SMA. She told me about medical treatment attempts in Poland and in the world which may lead to stop the advancement of the disease in the future. She also fixed L- carnitine dose for Peter. I think that parents with children with SMA should first go and see dr. Jędrzejowska.

Next we searched in Europe  – we found nothing.

Finally, we found the first significant sign – University in Utah /USA/ - a reply from dr. Svoboda, an authority in the field of SMA . On the basis of Peter’s examinations results and his overall health condition, she stated that valproic acid in his case is meaningful. And this statement, a very important statement I must underline, made that our hopes to cure our baby boy revived. The question was who would agree to prescribe to such a small baby a medicine which is yet in a test phase.

And again, I went to see Prof. M. (I must admit that at first I did not like her for the diagnosis she made without conducting detailed tests). Today, I may only thank Prof. Marszał, because it is thanks to her Peter was diagnosed so quickly and correctly, and since January 2008 he has been receiving medicines. (valproic acid and L- carnitine), the only available medicines for this disease in the word. We do not know if the medicines actually work as they are in a test phase at present. But if we don’t give it now, then when? When would be the right time? In two years’ time? Then, most motoneurons will die out and there will be nothing to cure. So, the fact that Peter received this medicine when he was only 5 months old is a sort of success, because it was not so simple in our country. I can only add that in the USA (the most advanced country in search for SMA cure) a big trial program started only this spring for children under two years old with SMA1. It was stated that valproic acid given to child with SMA in their early development stage may bring bigger improvement.

Will this be so? – we still believe.

 Peter’s Dad.

 

 

[Tuesday, July 15, 2008]

Memories  (Part Two) 

A short, three day stay in Katowice Pediatric Clinic was limited only to observation, and the doctors conducted necessary check ups in order to find out the reason for Peter’s limpness. ENG and EMG tests (to measure nerves conductivity and muscle structure) did not confirm spinal muscular atrophy diagnosis in 100%, which we were happy about. Instead, the doctors suspected peripheral neuropathy – a serious disease however curable. After several difficult days, coming back home was something wonderful, although we still worried about Peter’s future. For the next couple of weeks we did not want to admit that we were afraid that Peter may have SMA. Seemingly peaceful days passed quickly and we received first examinations results from Warsaw clinics which were supposed either confirm or eliminate metabolic/ hormonal diseases. Those tests confirmed that Peter is not affected by any of such diseases.

On the one hand – it was a great news for us, on the other hand this information meant that SMA is more probable in his case. At the end of November 2007 our worries came true. We were informed that Peter has a genetic disorder typical for spinal muscular atrophy. His SMN1 gene is mutated and, as a result, no protein is made which is important for the survival of specialized nerve cells called motor neurons.

A disaster. Even bigger, if we know that Peter is a healthy baby boy – the only thing that is missing is this protein, which is critical for normal muscle movement. It was so hard to believe in all this! We checked, there was no one in our families affected by such diseases; we have a healthy daughter – so how come such disease which, in fact, is hereditary?  The only explanation we got from Katowice clinic was – that there must be the first time for anything.

Another sad event is my discussion with genetics specialist which was limited to his statement that Peter will live two, maybe three years, out of which half he will spend attached to the respirator. No hope, I didn’t hear any positives, no advice to contact foreign institutions, which, at least., search for a cure for this disease, which at least may try to stop its progression. Apart from this – two, three years?  It does not include information about today world’s standards in case of such disease. Today I know that my discussion with genetics specialist was a waste of time for me and only made me even more depressed.

Help given by my colleagues and my family changed hopelessness into action. I started to look for a cure for SMA, and I fight for every day of his life. His smile makes up all the bad moments.

Tomek - Peter’s Dad.

 

 

[Sunday, July 6, 2008]

Memories (Part one)

I remember clearly, as it was today, my anxiety related with the fact that my son Peter was about to be born. On the corridor in Obstetrics in Zabrze I was asking myself a lot of questions, as many just-to-be-fathers do:
- what would be the sex? (my wife and I did not want to know before the labor), is it a boy or a girl? Our hears were for boy as we already have a beautiful 4 year old daughter Paulina.
- then I started telling myself that in fact it doesn’t matter – all it matters is that the baby is healthy, has all the fingers, can breath, and its heart beats as it should…
All of a sudden a midwife called me – at first I didn’t hear her, I guess I was slightly shocked.

“Yes, I am talking to you” – she said. You have a son. I started off to the room where the nurses were taking care of the baby. On my question -  “Is everything all right with the baby” they said yes. In fact Peter was very lively, we could hear him screaming all over the place, he was kicking that it was very difficult to weigh him.

It was the happiest day in my life. I was thinking – so now I only have to build a house and plant a tree. Who would have thought that in few months’ time we will have to face such a horrible disease – infantile SMA (Spinal muscular atrophy),  the most severe type.

After two weeks in the hospital, we came back home fully happy. I think, Paulina welcomed him the warmest, she was convinced that she would be playing with him very soon. We were aware of future sleepless nights, and that we will have to organize new home order.

Peter turned out to be a great baby boy waking up at nights only to eat. For the first two months he was a very lively baby boy, noticing things around him, smiling at every occasion – at the first sight – a healthy growing baby boy. Preventive check ups only confirmed his physical development, among all, unconditional reflexes – he passed the tests on A. No anomalies.

However, at the beginning of October my wife and I noticed that Peter was moving less than usual, that it is more and more difficult for him to pull out his hand from under the blanket, and that he kicks less while changing the nappy. First doctor said that probably it is because of the development phase he is in right now, and he ordered to visit him next month for a check up. Next days were not better however in the terms of his capability to move, on the contrary, when he was crying we could hear a slight change, as if the cry itself was difficult for him, as if his breath shortened, he was even more limp.  

Another visit was to neurologist – the “recommended” one. When we saw his face we already knew that something is wrong. He didn’t want to say anything, maybe he was not sure. Checking the reflexes didn’t’ help. “You have to make some special tests” – he said. We came back home – it was the first horrible evening for us. We had Peter’s examinations in perspective, we didn’t even think about leaving him in a hospital.

We wanted to make sure that all this is necessary. We were looking for a professional doctor who would tell us a diagnosis. We found Prof. M – national consultant for neurology. We were driving to her office hoping that Peter’s limpness is only a transforming stage, that the only thing he need are vitamins (supplements), another diet, or a rehab, and that Professor’s diagnosis will be favorable for Peter and for us.  

The visit lasted 5 minutes maybe – we heard the sentence because I cannot call it another words: Spinal muscular atrophy.

Question that my wife asked:
Is Peter going to walk? – the answer was “NO”
Is it curable in Poland? In the world?- the answer was “NO”
She recommended to leave Peter in Pediatric and Neurological Clinic in Katowice.

Until now, I still don’t know how we managed to survive these few minutes and hear these horrible sentence. I only remember that instinctively took Peter and went to the Clinic. It was such a shock for me that I don’t even remember the way from the centre of Katowice to Ligota – only emptiness.

Next shots, these are questions asked by doctors from the Clinic:
-         is he cardiovascularly stable?
-         is he respiratorily stable?

Words that sound horrible for each parent

To be continued…

Tomek - Peter’s dad.

 

[Friday, July 4, 2008]

Hi, my name is Piotrus,

I was born July 26, 2007 as a healthy, and cute little boy who needed two things only to be happy – little to eat and mummy’s smile. For the first couple of months I was screaming loud, kicking hard, so as my parents were convinced that I would be walking soon. The doctors said that I was perfectly healthy – I passed the unconditional reflex test, I was able to hold my head up, and everything seemed OK in general, we were thinking that the dream of walking could come true…

Today, everybody says that that it will not, however I still hope..

The horrible disease – a silent monster, it attacks slowly and to the point – it hit my hands and legs when I was 3 month old only. Because of this disease it is more and more difficult for me to move and play. Now, it took my voice and my first babble speech so I could breath.
All this is hard to understand. I still fight in spite of grimace on my face, and although I miss my home – I won’t give up.  I know that my parents and my older sister believe in me, though I can sense angst in their smiles.
I practice every day, I can grab toys with my hands better and better now. I even found the way to communicate – I simply send kisses. I can mesmerize everyone with my eyes and smile. None can pass me by unresponsively – such a boy I am! 

I will be one year soon, and I wish my dream came true – you know what it is – I wish someone found a cure thanks to which I could live a normal life, hear my voice, kick my legs, and tell my dear parents that I love them.

Piotrus