Please sign this petition to do with a rare genetic disorder

[pedropony76]

Hi all, hope I’m not breaking any talk guidelines by post this petition here!

I have a 3 month old son who spent 6 weeks in NICU. He was a full term baby so no indication as to why he was having any issues. My DS had his first seizure in my arms when he was 2 days old. He was also on oxygen for 5 days, had multiple infections such as sepsis over the course of 3/4 weeks. He has hypertonia (high muscle tone) so is under the care of physio and OT. He also had a feeding tube in for 6 weeks.

Despite running MANY tests, none of the doctors had any clue why. His dad and I agreed to genetic testing and we just found out that he has a rare genetic disorder called DYRK1A which only affects around 600 people in the world.

This petition was started by another mum in hope to raise more awareness for the condition and to hope more research can be done by doctors. This well help more parents and more family members to understand the condition and better support the children affected. Please sign and/or share if you can! It took me leas than 5 minutes. Thank you🫶

chng.it/7c78YyqDj7

Thank you @mnhq for posting this🙌

Signed.

Thank you so much! @britespark1 it’s massively appreciated x

Signed - my nephew has a rare genetic condition. I know it's so tough when very few people have any understanding of it.

@SweetSakura thank you so much!

Aw really, bless your nephew. It really is difficult especially when you don’t know what to expect as there’s hardly any research on the condition. My thoughts are with him and your family xx

That's exactly it @pedropony76 (good name!)... No one can give a prognosis as there is so little known about it.

Haha thank you😂 and honestly, it’s horrible

Yes, I really feel for you. I have just found out I have a rare (1/10000) condition and that feels lonely enough. And frustrating because you know that the funding just isn't there for lots of research.

I hope you get lots of signatures

Signed xx

Signed. I have a rare genetic disorder. I'm pregnant snd there's a 50/50 chance I'll pass it on and it's hard not knowing how DD may be affected.

Sending love to your DS

Thank you so much guys🥲 I can’t say how much I appreciate it.

@TokenGinger oh no I’m so sorry to hear that. The not knowing must be a lot to deal with but try and enjoy your pregnancy as much as you can💖 wishing you all the best too xx

Anymore for anymore? Hopeful bump

Thank you so much ❤️

I'm just commenting again to hopefully bump this in active threads xx

Thank you @TokenGinger I really appreciate it!

Bump bump bumpity bump