'Devastated' parents fundraising to give 'beautiful baby girl' a 'Berlin heart' after sudden cardiac arrest - 'or she will die'

The parents have set up a GoFundMe page to raise funds for the ‘Berlin heart’, a device that is their daughter's “only chance at survival”. The couple have wrote on the page that their baby daughter, just 14-months-old, was diagnosed with Dilated Cardiomyopathy when she was just a month old.

The couple said: “For months, medication helped her manage this condition, but two weeks ago, Penelope suffered a sudden cardiac arrest whilst undergoing a routine medication change at Leeds Children’s Hospital. She was placed on ECMO (extracorporeal membrane oxygenation) support – a machine that is keeping her alive.

“However, ECMO is only a temporary measure, and her doctors have told us that she cannot remain on it for much longer. Penelope needs a Berlin Heart, a mechanical device that can take over the work of her heart and give her the time she needs to either recover or receive a transplant. This device is her only chance at survival, but due to a shortage of beds capable of supporting this treatment across the UK NHS, Penelope may not be able to access it. Without a Berlin Heart or another solution, she will die.”

The pair added: “We are devastated, but we refuse to give up on our beautiful baby girl. Penelope is a fighter, and we are doing everything in our power to give her the chance she deserves. We have started this GoFundMe campaign to raise funds for a Berlin Heart and, if the funds cannot be used for this purpose, to support the incredible charities that have helped us during this unimaginably difficult time.”

They added that their daughter is “a bright and joyful little girl who is the light of our lives”, adding “she is loved beyond measure by her mummy, daddy, and a devoted extended family who adore her cheekiness, infectious smile and the happiness she brings to everyone around her.” The page hopes to raise £120,000 and currently it has surpassed that target. So far more than £128,000 has been donated.

Father, Jordan, posted an update on the page yesterday (Tuesday 17 December) saying they hope daughter Penelope will “have her Berlin Heart fitted by the end of the week.” He added: “We still have a long journey ahead with Penelope’s recovery but we are hopeful and feeling so grateful she’s been given this chance. The money raised from this page and that we hope to continue to raise will be able to support 1000s of children and families like us and raise awareness of the issues surrounding transplant and organ donation.

“We are also in the early stages of setting up our own charity, Penelope’s Little Heart”. You can find Penelope’s Little Heart on Facebook and Instagram.