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Léon Domenique Willrodt
Léon didn’t drink much in hospital, he wouldn’t breast feed from his mother and he lost weight very quickly. He was very often sick, and slept most of the time. His body-structure was dystrophic. Back at home from the hospital we had to go once a week to the paediatrician to control his weight. He was being sick very often at home and his faeces were thin. He would eat approximately every two hours, around 70g of food very slowly. Léon’s control over his body was very weak, he had absolutely no muscle control of his head, was very lethargic, and he didn’t react to any noises or speech directed at him. While the 4th Preventive-Examination at the end of his 4th Month was taking place, I spoke to the specialist about his movements and his squints in both eyes. The doctor said I was Hysteric and that Léon was fine, and that he was only developing slower than our first son Benedikt. After requesting Physiotherapy several times, we were finally allowed to start with a course in November 1995. In January 1996 the doctor has mentioned to us, that he would like Léon to undergo a Brain-Scan at the Special Institute for Physically and Mentally handicapped children in Hamburg. I was under the impression that the doctor wasn’t being at all too honest with us, and therefore my husband and I requested a second opinion from a different specialist. We were now in February and Léon’s diarrhoea and sickness were getting worse. Luckily due to the change in doctors our son was admitted on the 20th of February 1996 into the Hamburg Children’s Hospital in Altona. It was pointed out to us at his first examination, that the neurology would have started at around three months old. During his first week in hospital, several tests were carried out on him. It was revealed that he had an extremely large cyst in his head, extreme cerbellar atrophy, highly increased Liver blood scores, a swollen liver, ataxy, low blood pressure, highly retarded development, retracted nipples, squint, his appearance is dystrophic, and very chubby around his waist. After a week the doctors had a meeting to discuss Léon’s problems and it was suspected that Léon had CDG-Syndrome, a disease that the hospital had no prior cases of. For my husband and I, it seemed as if the time stood still, we had very many questions but we were receiving very little in the way of answers. After 3 weeks after what must have been a very stressful time for Léon, we were finally allowed to take him home with us. We asked for documentation on the disease, in order to put ourselves a little bit more in the picture, and to maybe understand a little bit more. At the End of March 1996, we received the results of Léon’s blood tests that were taken during his stay in The Hamburg Children’s Hospital. Doctor Helena Stibler at the Karolinska Institute in Stockholm, Sweden sent them on to us after her examination. The presence of CDG-Syndrome was now confirmed. Type 1. In the meantime we translated many of the documents given to us by the hospital, and were beginning to realise how our lives were going to have to change dramatically, it seemed to us, that the more we knew, the worse our fears became. Now Léon is receiving much more Physiotherapy and Ergotherapy, he is very susceptible to infections, is very often in hospital has and due to the fact that he was refusing any kind of food, has been receiving liquidised food via a stomach-tube since June 1996. Since October 1996 Léon had a stomach tube (Probe) inserted to help him to hold his food down. He receives a special calorie-rich food stuff. This seems to agree with him more. Our lives have totally changed in this short time. We seem to live each day more conscious of ourselves, and it pleases us a great deal to see Léon happy and at home. He is a very happy child, he knows how to laugh from the bottom of his heart and he is loved by everyone who knows him. He has a very hearty and intense relationship with his older brother Benedikt (4). Léon is now in the hands of Dr. Stephanie at the University Children’s Clinic in Kiel. All our questions now seem to be answered very polite, quickly and in great detail. Every three months Léon sits an eye test, he has still to receive a BERA-hearing test because of his loss of hearing in the high frequency region. The magnetic resonance imaging test also has to be repeated, to check the development of his other brain cells. On top of this, he is admitted to The Children’s Hospital in Hamburg every eight weeks as an Out-Patient, to check how his blood congeals. Now at Eighteen months old, Léon is getting slightly better, he is now drinking slowly a little from his bottle. He talks a lot, and has made good progress mentally. He seems to be interested in everything. He still cannot turn himself around, he can’t sit yet and sometimes he doesn’t get his co-ordination right. Léon is our sunshine, he makes us so happy everyday that he’s with us, and we hope he will remain to do so for a long time to come. eff: 1997 |
