Cooper and rylee

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Hey there!

My names kassandra 22 years old

Me and my fiancee have 2 little boys with serve heaomphilia A

Cooper is 3 and rylee is 6 month old

Cooper got dignosed with heaomphilia at 15 days old, after a trumatic birth that turned my world upside down, after such a trumatic birth cooper suffered a bleed in between the skull and brain and lost more than 70% of his total blood loss he got rushed to the royal womems hospital melbourne, which he then recovered from we didnt find out then he had heamophilia due to them just putting it down a truma while giving birth, after 2 weeks in hospital, we finally got to go home, but we were back in as quick as he was let out do to having gastro they did a bladder tap (to make sure he didnt have a urine infection) and he bleed the next day out of his penis ( i have never seen that much blood) we got rushed from frankston hospital to the childrrns were they finally put everything together took a blood test and discovered that cooper had sevre heamophilia A less then 1%

I had never heard of heaomphilia, nor did i even know what it was, my family had never heard of it nor did anyone else have it in the family, it had never came out in our family, coop was the first..

Coop has just gone from daily treatment to 3× weekly treatment with advate (1250units) we have just had his 2nd port taken out and a 3rd one put in (3rd time luckly hopefully), after already rejecting 2 ports ( one lasted 18 months the other one only last 5 months) doctors decided that his body wasnt tolerating his port being accessed everyday nor did it like is leaving the needle in every couple of days) cooper also has inhibitors..

I had the blood test done when i was pregnant with rylee to see if i was a gene carrier turned out i was

 Rylee was diagnosed within 3 days of his birth 

We are still waiting to start treatment with rylee as he still hasnt had his first bleed (but bruising is already starting so i dont think its going to be long before he does get his first bleed) and then we can start organising a port (life savers) im hoping that rylee won't develope inhibitors like his brother so that he can go on a study trail

If you have questions dont hesitate to ask