u/ralves_

Selamlar,

1350000₺ bütçem var, 2 sene kullanacağım bir araba alacağım bu ikisi arasında kaldım. Frontera e 10000km civarı golfler ise 60-70-80bin km ye var ikisi de hasarsız. Satarken daha çok değer kaybecek olan hangisi sizce, frontera-e nin menzili kısa ama bize uygun sadece şehir içi için alıyoruz. Bir de android oto kablosuz şarj fln var golf de fena dolulukta değil ama sonuçta eski teknoloji, bu arada evimizin hemen önünde şarj istasyonu var o da problem değil

Hi everyone,

​I'm a father to a boy who was diagnosed with severe Hemophilia A when he was 6 months old. We went to the doctor after noticing very small bruises on his elbows, and following the blood tests, he received his diagnosis. We started him on Hemlibra every 2 weeks. Since starting Hemlibra, he hasn't had any complications.

​Up until now, (15 months) managing the condition was relatively straightforward, but he is now at the stage where he's learning to walk—and walking like a little drunk person! :)

​My wife developed severe anxiety after giving birth, and this diagnosis pushed it to a whole new level. Because she is terrified of target joints, we never let go of his hand when he walks, and we don't allow him to fall at all. This isn't even open for discussion—whenever I try to bring it up, we get into very intense arguments. I'm exhausted from fighting, but I'm deeply worried about my son's physical development.

​I regularly attend hemophilia association meetings, and doctors keep emphasizing that on Hemlibra, it takes a very severe injury to cause serious complications. Yet, we don't even let him fall onto soft play mats. In fact, almost our entire house is covered in soft padded mats.

​I don't know what kind of long-term effect this overprotection will have on my son. I feel like not learning how to fall (and how to catch himself) might end up hurting his movement and motor skills even more. Whenever I suggest to my wife that she might benefit from psychological support, it leads to huge fights. I truly believe this dynamic might end up harming my son more than the condition itself.

​I know that building good muscle mass is crucial to protecting joints and avoiding target joints, so he will definitely need to get into sports as he grows up. I really hope he ends up loving swimming—otherwise, things will be very tough for us.

Of course, I worry about my son immensely as well, protecting him and really focused the environment to prevent any harmful material when we playing or doing any other activities but I'm trying to accept this condition and treat it as just a small part of his life—especially seeing all the progress being made in gene therapy.

​Preventing every single fall is impossible. Occasionally he slips away from us and falls, and seeing that nothing bad happens reassures my wife a bit. That’s a positive sign, but I fear that if a minor incident ever occurs, we'll end up right back at square one.

​Are there any parents here who have gone through a similar process? How did you handle this anxiety and balance keeping your child safe without stifling their development?