Ravenscar family’s urgent plea to help keep 14-month-old daughter alive

Hollie Suff and Jordan Greathead’s 14-month old daughter, Penelope, suffers from dilated cardiomyopathy, a severe condition where her heart is unable to function effectively.

Until recently, Penelope had been stable on medication, however, her condition deteriorated dramatically two weeks ago when she suffered a cardiac arrest.

Since then, she has been on ECMO (extracorporeal membrane oxygenation) support at Leed’s Children’s Hospital, which is providing temporary life support.

Penelope’s parents have now been told that she may not be able to access a Berlin Heart, a life-saving mechanical device that could help her heart function and give her a chance at survival.

This is not due to the unavailability of the device itself, but because of a lack of beds across the NHS capable of providing the necessary care. Only two centres in the UK are able to provide the life-saving device: the Freeman Hospital in Newcastle and Great Ormond Street Hospital in London.

ECMO is a short-term solution and cannot sustain Penelope for much longer - without the Berlin Heart, her prognosis is dire.

Penelope’s parents, who both currently serve in the British army, said in a statement: “We are devastated that Penelope’s chance for survival hinges on systemic challenges rather than the availability of the treatment itself.

“We believe that raising public awareness of her situation could prompt action and bring attention to the critical need for resources in our healthcare system to support children in similar life-threatening circumstances.

“Penelope is a fighter and has already shown incredible resilience.

“As parents, we are doing everything in our power to advocate for her and explore every possible option to save her life.”

A GoFundMe campaign started by the family to raise funds for a Berlin Heart has so far raised more than £60,000 of the £120,000 target.

Writing on the GoFundMe page Jordan said: “If the funds cannot be used for this purpose, [they will be used] to support the incredible charities that have helped us during this unimaginably difficult time.

“We are also using this platform to raise awareness about the importance of organ donation and blood donation – two critical components of saving lives like Penelope’s. If you’re not already on the organ donor register, please consider signing up here: https://www.organdonation.nhs.uk/.

“Blood donations are also urgently needed; you can find your local donation centre here: It will take less than an hour out of your day to donate. https://www.blood.co.uk/.

“Your support means the world to us. Whether you’re able to donate, share Penelope’s story, or help raise awareness about these vital issues, you are helping to give our daughter and other children a fighting chance.

“We cannot thank you enough for standing with us during this heart-breaking time.”

Follow Penelope's Little Heart on Facebook for updates: https://www.facebook.com/share/15E53ob63r/?mibextid=LQQJ4d or visit the GoFundMe page at https://www.gofundme.com/f/wrajpy-help-save-penelope

An NHS spokesperson said: “This in an incredibly difficult situation for the families involved and an extremely complex area of care, where the expert capacity to support children who are eligible for heart transplants is inextricably linked to the availability of organs following the tragic loss of another child’s life.

“It remains a major and extremely challenging decision for families to make the life-saving choice to donate their child’s organs following an unimaginable loss.

“Any child waiting for a heart transplant is assessed individually and prioritised on the basis of clinical need and we are continuing to work nationally across the NHS to ensure children and families who are waiting for a heart transplant receive the best possible care at every stage.”