Daniel Nicolae Belcescu
Help my son to get the treatment that only in Austria is possible
My name is Daniel and since I was born in January 2018 I didn’t have a good and peaceful life. I have been in neonatal for almost two months from where I was transferred to Great Ormond Street Hospital because the doctors from neonatal they didn’t know why I was feeling so sick. Finally at GOSH the doctors they managed to find out why I was feeling so sick. After almost three weeks in the hospital my parents have learned that I was diagnosed with rare kidney disorder so called Nephrogenic Diabetes Insipidus. Following this diagnosed I started to go every two months for regular checks and a treatment to stop my kidneys in passing large amounts of urine and to help me gaining weight. Giving the nephrogenic diabetes insipidus my weight gain it is not a normal one therefore a dietician is involved too and after they’ve tried few milk formulas to help me to grow. I developed a serious gastroesophageal reflux disease so I was vomiting 10 to 15 times a day and failing to thrive.
So in one day I was given Goat milk formula that helped in minimising the vomits and managed to reach now at 15 months 8.1 kg. But this was possible only via NG tube which was placed in May 2018 at GOSH so is been over a year since I’m being fed like this because after too much vomiting I developed food aversion. I am interested to eat solid food but once I feel a little bit in my mouth I vomit because of my gagging reflex is too sensitive due to many vomits from the past. This NG tube is placed through my nose and with the help of special dressing which is placed on my cheek and looking in the mirror now I’m thinking that is this part of me or not. Looking at other children I’ve noticed that they don’t have something like this. It is very hard for me having this tube all the time and sometimes I pulled off by mistake and is very scary for me when the nurses they passed back and I cry a lot.
My parents have learned after long search on internet about a private clinic which is called Notube from Graz, Austria who are specialized in paediatric psychotherapy and have managed to help children from around the globe with feeding disorder. But the cost is something that my parents cannot afford therefore I would like to ask for your help so I can go there with my parents to receive the help that I desperately need in order to eat normally.