Seaford mother raising money to take son with heart conditions to Disneyland

Brieanne Oakley-Ives’s son Benny was born 27-weeks prematurely with a multitude of health complications. The young child currently has three heart conditions, one being a pulmonary vein stenosis which resulted in a him having a stent put in his heart.

Brieanne explained: “He was a micro premature baby weighing 617 grams when he was first born. He has had four heart surgeries and it has left him with chronic lung disease. His lungs were so small and underdeveloped that he needed the oxygen compressor to pass air through his heart to manage the heart diseases, as well as his chronic lung disease.”

After cancelling two previous holidays, the family received a donation from charity Family Fund, allowing them to take Benny to Disneyland Paris this February for three days.

However, Brieanne soon realised that she have to pay for an oxygen compressor to take on the train to France, which would cost an extra £600 on top of the £1,300 they have already spent on the trip.

Benny’s mother explained: “We were given a little bit of money to help us get on holiday because we had two holidays cancelled due to Benny’s illnesses. I paid for the rest of the holiday because I wanted to take him to Disneyland as it’s something I know he will love.

“I forked out the rest of the money. I was told by my oxygen company that they would be able to supply us with oxygen. Unfortunately, that was not the case and the company had gone private. So it turns out I have to pay money to hire oxygen for him to go on holiday.”

In the last three years, Brienanne has spent 252 days in hospital with Benny, describing the experience as an ‘emotional rollercoaster’.

Due to his health conditions, doctors told Brienanne that her son would not live past the age of two.

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Now at the age of three, the Seaford women says she just wants to give Benny the best life possible for as long as she can.

Brienanne said: “It’s been a terrifying three years, He is the most amazing child. He is the happiest boy you will ever meet, he has been through a lot.

“He has had so much to deal with in his life. He has more operations then most adults will ever have in their life and his heart condition means that he should have only lived till he was two and he is three now.

"I want to put as much into his life as I possibly can, for however long we have with him. I want him to live as best as he can and I want to make the best memories with him.

“I am astounded with the support we have had and thank you to anyone who has or wants to donate. It’s incredible and I can’t wait to get us there.”

To donate to Benny’s page click here