Support for Lili and her family

Lili is only 4 months old and both she and her family (Martha (Mum), Hedd (Dad) and Leia (Sister)) have been through unimaginable pain and suffering in her short life. She has suffered from Enterovirus Meningitis, medical errors leading to damage to her brain and a leaking heart valve. Lili currently relies on medical help to keep her little body going but she is fighting hard while the medical team at 3 hospitals try and help her. It's too hard to even imagine how her parents and family feel and what they're going through. We want to try and help in the only way we can and ease the financial worry on this poor family split between home in Machynlleth and Cardiff.

Lili’s medical complications started shortly after her birth when she contracted Enterovirus meningitis. This was originally treated in her local hospital and Lili was sent home after only a few days. It didn’t take long for her mum and dad to realize things were not right, they fought to get Lili back in the hospital. After being re-admitted it was clear how right they were. It wasn’t long before Lili was urgently transferred to Bristol Royal Infirmary Children’s Hospital, the meningitis had not cleared and had attacked her little heart. Her parents were told to be prepared for Lili not to even make it to Bristol given her condition.

Lili the little fighter made it to Bristol where she was fully ventilated, sedated and given life-saving medication. Bristol sat both mum and dad down and explained that the Enterovirus has attacked her heart and caused her to have a condition called Cardiomyopathy and also damage to her left mitral valve. They hadn’t been at Bristol for 24 hours when the family were called back again to have another hard discussion with the consultant about an error made in Lili’s care. They were informed that Lili had unfortunately had a medicine error, the family were told she may have brain damage and only an MRI would give them the answer. That night Lili did have seizures due to this error and later that week the MRI showed mild damage to the occipital lobe which could result in potential seizures and issues with vision. The family were devastated.

Lili’s stay in Bristol was a period of trial and error in trying to reduce medication and remove her ventilator. After a few failed attempts Lili took matters into her own hands and pulled her ventilator out and it seems she knew best as she was able to breathe unaided! 8 weeks later she was discharged from ICU and moved to a ward in Cardiff…..then finally home.

Lili’s family were ecstatic that she has improved so quickly and were able to get excited for Christmas! However, Lili again took a turn for the worse and had to be admitted to Cardiff Children’s Hospital only a week before her first Christmas. The family had to make heartbreaking arrangements to care for both Lili and her big sister, Leia over Christmas. Much the same as Bristol it was a case of getting Lili stable and able to function on her own. Lili again made an amazing recovery to be discharged in time for New Year’s Eve.

Lili and her family were able to celebrate New Year’s Eve however not even a week later they were back in her local hospital, kept in after a routine jab due to Lili not being 100%. Lili spent a few days there where she deteriorated rapidly. Failure to treat her underlying virus and inconsistent monitoring led to Lili needing to be resuscitated twice all while her mum and dad watched on in absolute horror and despair.

Lili was stabilized and again urgently transferred to Cardiff Children’s Hospital fully ventilated and given medication for her heart. After a few days Lili showed positive signs and was able to come off ventilation but unfortunately being off the ventilator made it clear that Lili was not herself. She was uncomfortable and unable to rest. What was initially suggested to be a bug or virus turned out to be a severe issue with one of her mitral (heart) valves. Lili’s mitral valve was leaking significantly she was urgently put back on full ventilation.

Lili has remained that way to allow a team of doctors from Cardiff, Bristol and GOSH to assess her case. Her family have been made aware of some options ranging from valve repair surgery to a heart transplant. What the best option will be is not clear yet. But what is clear is the fact that this poor family are going to be under stress and strain for some time yet.

Trying to care for their other daughter who is 3, their two dogs and keep a sole trader business afloat has been difficult to now and it’s not about to get easier for them. There is talk of care plans for Lili which could be up to a year. Bills don’t disappear in times of difficulty and their living expenses are going to be increased with extra travel being so far away from home and family.

Lili’s smile is intoxicating, her dimples are beautiful, and her sister misses her and asks for her daily.

Although they have a fantastic support network of friends and family at home to help with their eldest daughter and dog walkers, It goes without saying that they are heartbroken at this time and any support that can help alleviate some of the financial worries will be hugely appreciated.

The funds will be sent directly to Lili's mum Martha for use by the family.