Mum’s warning and plea after two-year-old diagnosed with rare heart condition

A mum has launched a fundraising campaign to help her two-year-old son after he was diagnosed with a rare heart condition.

Nicole Russell brought Ronnie Russell downstairs to try and comfort him when he woke up crying on June 19.

She called an ambulance when he went “really stiff and blue” before he was rushed to hospital.

The toddler is now on the waiting list for a heart and lung transplant after being diagnosed with restrictive cardiomyopathy

Nicole, from Ramsgate, says Ronnie had always been playful and would interact normally with other children, so the ordeal came as a great shock.

Speaking about the events that unfolded, the 23-year-old said: “He went to QEQM Hospital but because they were struggling to stabilise him, they wanted to take him to London.

“They were worried about taking him in an ambulance in case they had to shock his body again, so he was left with a specialist team who did manage to stabilise him enough to get him to London.

“We were told that they didn’t think he’d make it there.

“We arrived at St Mary’s, which is where we went on to Royal Brompton, which is the specialist heart and lung hospital.

“They have to get the infections down to do a cardiac catherisation of the heart to check everything.”

The transfer between the two London hospitals was made after crews at St Mary’s diagnosed Ronnie with restrictive cardiomyopathy, a rare heart disease which occurs when the chambers of the heart become stiff over time.

Nicole explained that she has been told to “fear the worst” on numerous occasions.

“We’ve been told this about three or four times,” she said. “He’s fighting and he’s pulling back. It’s absolutely terrifying, some days he’s just lifeless. It’s terrifying and just so scary.

“The heart condition is really rare and before this I’ve never heard of it.

“Ronnie actually has the rarest of the kind, and the only option is the heart transplant. He also needs a lung transplant due to the infections he’s had too.

“I’m more worried that the amount of time he has to wait for a transplant could mean more damage being done to his other organs.”

Nicole revealed how she sadly lost her sister Carla, 35, in September of last year, and said: “I’ve already lost my sister and Ronnie is my only child. I can’t deal with anymore loss.”

In order to help fund the costs for Ronnie and supporting him and his family post-surgery, a GoFundMe page has been set up. After discussions with friends and family, the target was set at £4,000. Having been up and running for just under a month, the campaign has now raised £3,366 from a total of 188 donations.

Nicole said: “We’re all having to do so much. He’ll have to stay until he gets the heart and lung transplant but even then, it’s £2.35 for a bottle of water.

“When he’s home it’ll be good if we have a bit left to be able to take him somewhere nice after all he’s been through.

“It really does help to know that I haven’t got to struggle even though he’ll have to have a lot more care. We want to be extra careful with it all but it just really takes a lot of financial stress off of us.

“It’s just amazing to see the support from the community and it’s great to see that people care.”