Katarina was born on the 26th of October 1997. The pregnancy was normal, the
first problem appeared with giving the birth to Katarina, because the delivery
was complicated and lasted for a quite long time, but in the end everything was
fine. Katarina was crying a lot in the maternity hospital and she started to
have some problems with breast feeding.
When we came home from the hospital, Katarina calmed down and she started to eat by bottle. Problems seamed to disappear and the things were going well. Katarina has been such a joy to us and each day had brought something new to our life and it seamed that our secret dreams have become true.
Ever since Katarina was born, it seamed that she was a normal, healthy, baby with some signs of colic. When she turned the age of three months, she become more and more irritable and she started to cry a lot. In the beginning she was crying for around seven hours per day and the legs become more stiff and stretched. I went to the doctor with Katarina, but the doctors said that the reason for that is bilateral grain hernia, because of the long lasting and complicated delivery that Katarina experienced. Later on Katarina's legs become more and more stiff and also her arms started to become more and more pressed in her fist. At that time we went to the hospital few times, because we thought that she suffered from hernia problems. The doctors also dissuaded us from surgical operation, because the hernia seamed not to be fettered and Katarina was too small for such kind of operation.
Closer and closer Katarina was coming to the age of four months, she started to cry all day long (night and day). She became more and more irritable and she started to have not only problems with eating, but also with swallowing and then we decided to take her to the hospital again. The doctors ultrasound her head and they discovered that she got a first degree brain bleeding during the delivery and that injury was still noticeable at that time. The doctors also noticed that she has very high (degree of) albumen. After we went home from the hospital we were still hoping on all the best and that everything will be all right with Katarina. Fourteen days later on, the symptoms became more noticeable. Katarina started to loose her weight and she started to cry all day long. On February we went to the hospital once again, where she also started to vomit.
On March 22, doctors from the hospital in Maribor, sent us to the Pediatric Clinic in Ljubljana. The neurologist there noticed, in a less than a week, that Katarina have diagnosis of Krabbe's Leukodystrophies. They also sent a Katarina's blood sample in London for a conformation of diagnosis. When we came back from the hospital Katarina calmed down and she become quieter because of medications. I was spending a lot of time with her, especially in the nature and we were all hoping that miracle will happen. With the help of my friend, who has Internet, I learned some things about the Krabbe's disease and Bone Marrow Transplant from the Internet. At the same time, we also got the result of blood test from London and Katarina's diagnosis was confirmed.
Since Katarina was three months old, we started with physiotherapy and she is responding very well to it. We are doing it every day and she feels much better after it. Usually we exercise around 5 o'clock in the afternoon and after that (around 6 o'clock) we take a bath. Katarina's mood depends on the weather a lot. She is such a kind of person, who needs a lot of kindness and she always needs to have somebody around. When we satisfy all this criteria she becomes calm. Katarina often cried during the night in the period from her age of four to nine months and then we also let her to sleep in our bed. But now, she often sleeps alone in her child bed and sometimes she also sleeps the whole night long. We always have had problems with feeding Katarina. At the age from three (when we noticed the first signs of Krabbe's disease) to seven months, Katarina was eating mostly condense food by bottle. When she was 7 months old she prefers a thin food, because she could swallow it easily. We also started feed her by spoon. She usually had five meals per day and it was taking us quite a long time to feed her, because we have problems with that. But the biggest problem in that time was drinking. Katarina was drinking by spoon and drank only a few spoons of water per day and that is also probably the reason why she gets genital infections frequently.
Sometimes it seemed to us, that Katarina is drinking and eating the whole day long, because we have such a hard time to feed her. In that time we try to adopt to the needs and wants of Katarina. With our persistence we somehow managed and her health seems to be satisfactory.. We noticed some progress with Katarina's weight. When she was born, she had 3570 g and she was 52 cm tall. Now in September, she waits 9300 g and she has 74 cm. In November, we saw that her eyesight has not been affected, but we noticed that her hearing has been weakened. She was not able to focus and follow the objects. She was not able to lift and hold her head, but she could still move her legs and arms sufficiently. Katarina has not smiled since February and but she still opens her eyes. When she does opens her eyes, it lasts only for a short time. She also has problems with digestion, colic and also with secretion excrement.
I must also tell that Katarina disease increased rapidly in few 7 months, but later it had seems that disease had stooped. Because of that the doctors told us that she would live only to her first birthday. Katarina celebrated her first birthday like a normal child. Inspire of all the problems that we experienced we love Katarina a lot and she means everything to us.
After a week from her first birthday Katarina got a small fever. This days she wasn't eating very much. The next day Katarina got the neurological attacks - seizures. By this I mean: she was shaking her arms and legs - whole body and by that she was heartlessness crying. By that I must also tell you, that she doesn't rolls her eyes. It seems that she had spas from nervous system. In few days attacks seem to disappear. But this medication didn't stop attacks, Steroids only soften attacks. One attack duration a few seconds but they repeated. They can last for 42 hours and more. That why we went to the hospital. There the doctors told us, that she had pneumonia - it was her first. In hospital Katarina got the Steroid 5 mg for her attacks and in a few days they were gone. After over one week in the hospital Katarina went home.
In December we noticed that her eyesight has been weakened. In that time we were having problems with swallowing her sallies or salivation. In that month we went to the Pediatric Clinic in Ljubljana. The doctor gave us the suction machine. Katarina's medication therapy so far was: 3 times a day by a half of Apaurin (2 mg) - Diazepam. A new therapy (because of neurological attacks): 3 times a day by one all tablet of Apaurin (2 mg). In that time we also learnt how to put in feeding tube into her stomach (trough her nose into her stomach). Every two weeks we had put in feeding tube, so in this why Katarina got enough liquid, that why she didn't have genital infection so frequently. Until October we use feeding tube only for drinking, because Katarina has still eating by spoon. In October, she was waiting 9450 g and 78 cm.
On Christmas day and New Years day were unforgettable for all of my family and Katarina loved to look at Christmas lights.
Since October 1998 Katarina is having neuro attacks - seizures (every 3-4 weeks). Since the last attack, which was in January, we have stared to feed her through tube. No medication in this attacks didn't help her. But her breathing is still O.K. Katarina is still responding very well to the surroundings. In the Eyes off God she is the most kindness and diligence's child in the world - she is our little Angel. The each day that we spent with her in unforgettable. She shows us life in a different way and all that things have bring family together. We don't know what future will bring. We hope and we prayer for Katarina, that future will bring all the best for her. From all things that had happen and will happen to us we will try to remember only the nieces things, like are MEMORIES.
June 2, 1999
Katarina is now 19 months old and her health is still good. With the help of Dr. Joanne Kurtzberg we managed to control Katarina's seizures, which she has had since October. We gave her Ativan - loram, which in that moment help her (3 times a day, one half of tablet). When is she having a seizure her oxygen level can drop to 65% and than goes up to 87% - 92%. Even her pulse fall to 60 times on minute.
Katarina had, in May, her first real pneumonia. We had her at home, because I know my baby better than anyone. We had a lot of problems with her saliva (with coughing and sucking out). After three week things are getting better. Katarina's breathing is still O.K.. Sometimes her level off oxygen drop's down to 80% and than quickly goes up.
Katarina is still responding very well to her surroundings, she knows everything (us and our family, her room, where she sleeps, ...). She is very emotional child and she means everything to us.
Katarina is now 2 years and 4 months old. Katarina is having seizures once a month. She usually has them 3-4 days. Katarina’s seizure therapy for one day is; one and a half of tablet of apaurin (2,0 mg) – diazepam, one and a half of tablet of loram (1,0 mg),one tablet of tegretol.
In December 99, Katarina had pneumonia and it lasted a full 6 weeks before she became healthy. This was her second pneumonia, her first was in May 99. The first 2 weeks she couldn’t do anything (cough, sneeze,…), she was sleeping all day and her breathing were very heavy. Than things stared to get better. In February Katarina stared to change her days and nights. In the day she sleeps, in the night we have problems with other things – salivation, …For now Katarina doesn’t need oxygen.
Katarina is doing this positive thing: last 3 months she is making noise, when something is wrong, BUT NOT ALWAYS; Katarina is looking around on some days more, than others. I think that she can still hear and see, because you can see her react, when somebody walks near her or talks with her. Sometimes during the day she raise or lifts her legs and arms. She loves exercise and doing chest therapy, inhale, ... She loves you singing and talking to her, she loves that you hold her hands.
In October Katarina was celebrating her third Birthday. She became very big
girl, she still doesn’t need oxygen - only when she is sick. She is a very healthy baby.
Last pneumonia was January 2000. This year only in September she had a cold. Beside that
Katarina health has been stable for two years.
Katarina can’t do anything. Sometimes she lifts her hands and arms,
sometimes she drinks a little of tea. She yawns a lot. We must all the time suction her
saliva out – days and nights. I must tell that Katarina is changing days and nights all
the time. We still exercise every day and we do massage all her body. Also I massage her
chest. I massage her with all kind of things – (homemade and other things which you can
by in the apoteke).
Katarina has seizure activity every month. They last 2 – 3 days. In last months she doesn’t have such strong seizures, maybe because we have changed her seizures therapy. I must tell that Katarina has only therapy for seizures activity. She gets one a day: three and a half of tablets “loram” and one tablet “tegretol”. I give her medicine every three to four hours.
Sometimes Katarina stomach becomes very sensitive. I feed her through “sonda”.
I am cooking her different kinds of vegetables and give her all kinds of meat. But when
her stomach is too sensitive to this food I give her the “pedisure” (which I must buy
it by myself). Sometimes Katarina has hiccups a lot - in one day (5-6 times a day and even
more). Then we give her something to drink – but usually that doesn’t help.
I must tell that we expecting a new addition to our family in February – the baby is healthy – thank God!! We have done prenatal testing in Ljubljana (in August) and then they sent it to London! In one week results became back that the baby doesn’t have Krabbe disease – it is a carrier.
We must tell you that we meet a new Krabbe family from Poland - Europe. We meet them three months ago. They
would be very happy if you contact with them through the letters. They don’t
have Internet!! They have a daughter
Suzann, who is 4 years old. She got the disease when she was 4 months old. They would be
very happy if you write to them and tell them your stories and feelings. With your letters
they wouldn’t feel so lonely. Their address is:
Bernadeta and Kristof STRACH
Poland - Europe
Update 11- 2-01
I must tell that we got a new addition to our family – son Denis. He was born 12 February 2001. Now he is 9 months old, and he is a healthy boy. On 26 October Katarina celebrated her four birthday.
Usually she still doesn’t need oxygen - only when she is sick. Sometimes she will breath heavily and her oxygen level is around 80%. Usually when she is O.K. - she breaths 10 – 12 times a minute. She had her third pneumonia in February 2001. She had breathing problems and she was on oxygen for one week. Her oxygen level went down to 50%, and she was breathing 4 - 6 time a minute. When we were in the hospital the doctors told us that she had the incorrect shape of chest. Katarina still have seizure activity. In last few months we raise her level of Tegretol and it seams better. Sometimes Katarina has the hiccups a lot - in one day (5-6 times in one day and even more). She'll usually hold her breath so long, that will stop her hiccups.
the year 2002 Katarina was sick two times – in March and in September. Since
March she is almost 24 hours a day on oxygen – she is usually on one-liter
oxygen. In April 2002 we noticed that Katarina was in pain, special when she was
breathing out (or when we had exercising, or when
we had made some moving with her). When I was looking and touching her chest I
noticed that her rib is probably broken. Than we went to hospital and there was
taken pictures of her breast-chest. The
result was – she had two broken ribs. I was terrified, because I didn't know
how did this happen. That why I provide a children hospital bed, because the old
one was too small and uncomfortable for her and us. Since that only a few people
can lift her up and when we move her we are trying to do this carefully. Also we
gave her 2 times a day vitamin D. Nothing happed since that!
is having problems with sleeping at night. We had tried some drugs but nothing
helped. We have a lot of work with her salivation (we such her out a lot). On 26
October 2002 Katarina was celebrating her 5 Birthday.
Katarina usually breath 6 – 8 times on a minute. In October we notice some changes, because sometimes her heart beat fall down to 35 and raise up to 120 on minutes. Every day Katarina gets Pediashure (250 ml a day) for raising her weight. She is on seizures medication – Loram and Tegretol. We exercise a lot and massage all her body. We do a lot of exercise for better breathing. She is the most beautiful girl I know, with largest eyelashes and nice eyebrows. Isn’t she!!! Her brother Denis will be 2 Years old on February 2003. He likes his sister very much. He shows things to her, he likes to hold her hands; … they are like all brothers and sisters!!
On 4 February 2003 Katarina went to see some doctors in city Ljubljana, so that we could try some new drugs. Then she catch cold. At first nothing seems wrong. On 5 February we went home. All night at home we were trying to suck her salivation out - but nothing helped. She was still looking, yawning, and moving her hands a little bit. On 6 February she got antibiotic. In two hours the pictures of Katarina was different. She got spasms in her throat, she couldn’t yawn or open her mouth, and she was in pain. The last time when she was sick, wasn't spasms so bad and strong. In two hours we manage to control spasms with drugs - steroids (valium). After 3 hours this were going better. On p.m. at 19.00 I know that something was very wrong, because her oxygen lever was lover that 50% - beside that she was on 5 liter of oxygen machine. And also her breathing was changing. After 2 hours we saw that Katarina almost stopped breathing. That why we take machines of and she take just a last breathe and she was asleep.
Katarina pass away on 6 February. She fall asleep in mom and daddy arms at home. I just miss my little and very brave girl. I know deep inside of me, that she is still with us. But the rest of her is in heaven with other children.
Don't weep by my grave,
I am not here and I not asleep.
I am a thousand winds,
shine on white snow,
sunny ray on clear sky.
am not here and I not asleep,
am the light in a bad moment,
am free bird in early small hours,
day and night will watch over You.
jočite ob mojem grobu,
tukaj in ne spim.
lesk na belem snegu,
žarek na vedrem nebu.
tukaj in ne spim,
luč v slabem trenutku,
ptica v ranem jutru,
ki dan in noč za Vas bedim.
With all the love in our family we try to do the best we can and make sure that Katarina’s life and ours lives are unforgettable.
If you would like to contact Katarina's family, Please send them an e-mail firstname.lastname@example.org
Katarina's family is very interested in knowing if there are any other families in Europe who they can talk with. …With a lot of hope for children all over!
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