Eastbourne mother's rail strike anguish as son awaits transplant

Jeni Desautels, 35, of Tweedsmuir Close, is concerned she may not be able to get her son Jakob to hospital in time for the operation he could be called to have at any moment.

Jakob is currently on home dialysis awaiting a transplant, but can only be treated at Evelina children’s hospital in London.

They also have to visit the hospital every two weeks or more for check-ups or if there are any problems.

“It’s an absolute nightmare, it’s been going on for months – just one thing after another,” said Mrs Desautels.

“I’m terrified of the day he gets a call and my husband is working away.

“It’s literally putting his life at risk.”

Her husband has often had to take the day off work to drive Jakob up to hospital when trains have been cancelled.

Mrs Desautels, who cannot drive, said, “I’m fuming at Southern and the unions.

“I’m angry when I see pictures of the strikers smiling outside Eastbourne train station.

“I appreciate their arguments – it’s just the smugness that comes across.

“The amount of times we have been stuck at Victoria.

“We got stranded at Gatwick once, we were just told to get off the train and get a cab at 10 o’clock at night.

“I have to get him up there as soon as possible if something goes wrong.”

Mrs Desautels recently posted about her situation on Facebook and got in touch with the RMT.

She says a spokesperson from the union replied, saying, “It is very unfortunate that people are suffering because our government is so insistent on inflicting their dogma upon the railways.

“I will happily share your link on our Facebook page. I am sure our members would be happy to raise money to ensure your family can get to any treatment during the strike.”

But Mrs Desautels is not happy with the unions or Southern Rail. She said, “Someone from the RMT said ‘get a cab’.

“I don’t even know if a cab would take me, especially if Jakob is really ill.

“It also takes longer to drive, which is why we rely on trains.

“We rely on this service. The only place in the whole of the South East for his condition is this hospital in London.

“And they are in despair because so many patients are struggling to get up for lifesaving treatment.”

Jakob was diagnosed at the age of five and has been on the waiting list for 18 months now, but has been told he may have to wait two or three years due to a lack of donors. He takes 25 tablets a day.

Mrs Desautels said, “There’s no alternative. I can’t even get a reliable coach service.

“I don’t know why Southern have not been able to provide a bus replacement service.”

But the Facebook post has since received a lot of responses from members of the public offering her and her son a lift should they need it.

She said, “The response from other people that has been overwhelming. I have had so many people saying they would gladly take us up to London, or saying they want to set up a crowdfunding page.

“I like to pay my own way but it’s amazing that the general public is asking to do more than my own local MP.”

Mrs Desautels is also hoping more awareness can be raised for Jakob’s condition.

She said, “It’s a very lonely condition, we get no support.

“It’s a life-threatening condition but there isn’t anybody to help.”

The family have spent hundreds of pounds on taking Jakob to and from hospital.

Mrs Desautels says Jakob, who loves to play football and swim but can’t due to his health, “keeps bouncing back and smiling. He gets on with it.

“But he gets so upset and frustrated with the trains.

“This has been the straw that broke the camel’s back.”