Desperate situation turns into hopeful future

14 December 2017 our son Jordi was born, at first everything seemed to be going well. But about three hours after his birth, the nurses noticed that he was very restless and moaning breaths. The saturation did not appear to be good and Jordi was transferred to the neonatology department. For us, the kick-off to a rollercoaster full of emotion and uncertainty.

After several failed tests (6 times an epidural), the diagnosis of Meningitis came. After a course of antibiotics and 3 exciting weeks, our son was finally allowed to go home.

After about 3 months, Jordi was given an MRI of his brain. That meant next setback, our son had a slight lesion in the motor part of his brain as a result of a brain infarct.

Because the image Jordi showed did not match the brain damage, the neurologist ordered additional tests. During which, by chance, problems with kidneys (horseshoe kidney) and spots on his liver were discovered. However, the neurologist remained under the impression that there might be more to it, and so we were referred for clinical genetic testing.
To make a very long story short, our whole life revolved around hospital (over 120 visits in the 1st year) weekly physiotherapy and occupational therapy and caring for and around Jordi.

Jordi was very restless from birth, always having his arms in overstretching. Normal daily care like feeding, bathing, changing, dressing and undressing was very difficult because he quickly went into a form of panic. In the process, he would overstretch like a banana, cry terribly and it was very difficult to calm him down then. Visits to the hospital, strange noises, visitors, etc. all caused Jordi tremendous agitation. This agitation led us into a kind of vicious circle in which he no longer wanted to eat or sleep, resulting in new panic attacks.

Around his first birthday, Jordi's problems increased. It was clear that he had a huge motor deficiency. For example, sitting was very difficult, grabbing something himself and putting it in his mouth were all impossible.
Jordi was extremely busy, and because he uses a lot of energy in the process, he struggled to maintain his weight. Meanwhile, he did get stronger and stronger, and where at first it was just crying, he also increasingly resisted physically during normal daily care. Changing a nappy was almost impossible and dressing and undressing usually degenerated into a vulgar 'fight'. After (re)examinations and tests in the hospital, it became clear why: Sensory Information Processing Disorder; extremely overexcited for sounds, touch and balance, among other things.

Through good friends, we got in touch with Madeleine Meuwessen and Star Remedies Blossom Therapy on 3 June 2019, to be honest, I was pretty much done with it at the time. We had been battling for ages with the municipality of Haarlemmermeer for help via a PGB, (8 months after the 1st application, we are still not a step further). And for me, this was yet another well-meaning advice. However, we were nearing despair by now, so what have you got to lose.

The first conversation with Madeleine was very positive, during which I also honestly stated that I was extremely sceptical. Madeleine didn't think this was a problem at all, you are here for your son and I am sure I can help him. After a conversation lasting over an hour, Madeleine gave me drops to add to Jordi's food and drops for the bath. The result was unimaginable, the drops in the bath did not always work, which was too much for Jordi. But after a few days, Jordi became noticeably calmer. We could change a nappy reasonably normally and the panic attacks were much less. Of course, not everything was solved, but for us Jordi was a completely different and much more importantly, happier little man.

Despite the clear result, however, I remained sceptical, maybe I just didn't want to believe it. Jordi had had ups and downs before but they were always followed by setbacks.
After the 2nd visit a month later, I was completely won over. I told Madeleine that Jordi often woke up in a panic. And she wanted to try some with new drops, but told Madeleine added, there was a chance this would be too early for Jordi and then I had to call immediately. It was indeed too early, he became unimaginably angry at everything and was completely unruly again. After contacting Madeleine, we went back to the previous drops. After a few days, the anger had disappeared and Jordi was completely the "old" again from the month before.

Last month came the results of clinical genetic testing; PTCHD1 syndrome. So rare it doesn't even have a name, with increased risk of autism, intellectual disability, ADHD, motor problems etc. Not a pleasant result but nonetheless a relief for us. All the problems of the past few months fell into place, and that strangely enough makes it all much easier to deal with.

Jordi is now 20 months old and because he is much calmer thanks to Madeleine and the Star Remedies Flower Therapy, he is also developing much better in other areas. Motor-wise he is making great strides, and where at first it was questionable whether he would ever be able to crawl let alone walk, he is now walking along the sofa. He is starting to babble a bit and it is super to hear Daddy and Mummy and Grandpa every now and then. Of course, some of this includes normal development, but we are 100% convinced that this is largely due to Madeleine's drops. This is reinforced by the opinions of others, my friend is active on social media and a member of several (parents') groups of children with disabilities. There, too, there is a lot of talk about Star Remedies Blossom therapy and the positive results.

Despite all the problems, we enjoy our son every day, he is and remains the sweetest and cutest little guy in the world. We do not know what the future holds for Jordi and that remains a big question mark for the time being. There has only been one study worldwide on PTCHD1 syndrome, and the differences in the development of these (15) children is huge. But what we do know is that with Madeleine's help, together with Jordi, we are facing the future with much more confidence