here is my partners facebook if you wish to ask anything or talk directly with us https://www.facebook.com/jamybboyjd

Our son hunter is now 12 days old and is in the NICU of Newcastle RVI he has many problems from noonans syndrome to small lungs and bilateral talipes (club foot). we live over 75 miles away and have two other girls, our little boy is going to need to have a Tracheostomy done, this means we will be spending at least 3 to 6 months in hospital, we do need your help and if you cant donate please share this with family and Friends, please use the link to contact us on facebook if you wish to chat or ask anything.

Hunter has the following problems and conditions.

small lungs this is from a range of problems he got in the pregnancy, they have him on a case of that seem to be doing there job.

heart problem, two of the valves our of the four join together in his heart, we do not know what this means for him at this time but the Freeman hospital have been and are talking about this.

cystic hygroma, this was what kicked all this off and led to the investigation in the pregnancy, this is stable as of now however they are doing CT scans this week to see if it causing any problems under the skin and that we cant see.

bilateral talipes, both feet a bent, this will not be address until he is older, this is common and does happen in a lot of babies, this can be fixed with ops and shoes.

Noonans Syndrome PTPN11, there is not a lot to say here as we do not know too much our selfs, NS is very hard to explain here, is is very vast and complex as it is all ways different in every child that has it, i will make i video and upload it next week once i have time, i will explain as much as i can then

we are asking for support for our travel so we can see our son and seek a specialist's help as they dont have any that know noonans that well and help us still give our girls a normalish life, he was born at 37 weeks but suffered from hydrops in the pregnancy this means he has lungs of that of a 2 month premature baby's, he is our little boy that we love and have given

we do need some help with costs for the following.

travel. as we dont drive we ether have to get the train or ask family to drive us there, we have had support for this over the last month, we never expected to be here for upto 6 months.

london. we need to speak and see a specialist that is in london as unfortunately the doctors are lost here of what is causing some of hunter problems and we do not have anyone that specialist's in that area of noonans.

From our 12 week scan we was told there was something wrong because he had a cystic hygroma on the back of his neck this is how all this started, we was told a lot he would not make it from scan to scan but be kept going and going, before he was born we was told there was a good chance he would pass in just a few hours he is now 12 days old and fighting, in our head we did think everyone was wrong and there was no way he could ever be ill or as bad as they said, we was wrong and right at the same time, he is fighting and we chose to give him that chance, thank you so much for your time, i will be updating every day.

we have been getting a few people that have disagreed with us asking for help, please let me make it clear we do not mean to offend or hurt anyone by asking, we never expected to have a son this ill i do not think anyone does, it is hard for us to ask for help as we have all ways just got on with life no matter what but this time we cant do that, We have been told since the 12 week scan our son would DIE and not make it, we was also told after he was born we would have hours with him if we was lucky, how do you plan for that? what would you do if some one said to you your kid/s would die in a few hours? how would you plan for that? i hate the fact i have had to add this but there is a must here, i am sorry if i offend anyone by this but trust me is was harder for us to ask for help.

here is my partner with hunter, this was the first time he

got to hold him.