Baby Kodie's journey.

I am hoping to raise money and awareness for my 9 week old nephew Kodie.

He was born 3 weeks premature but his mummy's waters broke at 34 weeks and he was left in there for 2 weeks until delivery. Since being born Kodie has had to be resuscitated a number of times and has been found to have a small curved neck/spine, due to this he has to be on oxygen 24/7. He was transferred to the RVI to be seen by specialists and we have recently been told he is blind & mostly if not completely deaf and most recently, that he will probably never walk. Along with that he needs to be on oxygen 24/7 more than likely the rest of his life.

Due to his breathing difficulties and him continuing to stop breathing he has been heavily sedated and ventilated. He is in intensive care and will remain there for the forseeable and will do through the next steps of his treatment. The RVI has had many meetings, including specialists from Great Ormond Street Hospital and they have all said he only has 50% chance of survival. He has since ended up with pneumonia. MRI scan shows his spine is curved and split at the top and this is the cause of his short neck and set back jaw. Kodie had to be fitted with a nasal passage airway due to his tongue flopping to the back of his mouth which is also obstructing his airways. The specialists have said that Kodie most likely has a very rare disorder (wildervanck syndrome) which only usually affects adult women and rarely diagnosed in babies, which none of these babies have survived unfortunately and he is 1 of 100 to have this rare condition.

Kodie is so tiny and has a very long journey yet & they have said he will be in hospital for at least a year. But he is fighting as tiny as he is.

Mammy and daddy are travelling back and forth to the hospital as they have 2 other little boys that also need their parents. I'm wanting to raise a little money to help them with hospital trips and day to day costs.

Please help us help Kodie and his family. Money raised from this will go towards Kodie's care needs, travel expenses and helping care for his two older brothers during this difficult time.