Help support Everleigh-Rose's family

In May 2022, just a month after she was born, Everleigh was taken to Russells Hall Hospital, who later realised that Everleighs heart was not functioning properly. She was rushed to Birmingham Childrens Hospital after being intubated and fully sedated. Everleigh was diagnosed with Myocarditis and dilated cardiomyopathy (severe heart failure). Her heart is 3 times the size it should be and the muscles around the left side of the heart are extremely weak. It was later established that this was caused by an extremely rare genetic disorder called alstrom syndrome. Birmingham Childrens Hospital immediately started her on milrinone treatment which usually reverses the effects of heart failure.

After 5 weeks at Birmingham Childrens Hospital consultants were concerned that there had been no change in her heart function. They decided to refer her to Great Ormand Street hospital to be put on the heart transplant waiting list as this was her only chance of survival. Everleigh was accepted on the list soon after. So far everleigh's journey has been full of ups and downs and we have been close to losing her on several occasions. She has fought so hard to overcome every hurdle along the way. Once Everleigh reached 7kg (which was the beginning of september) Great Ormand Street revealed that this could open up more options for Everleigh if she was to deteriate. A mechanical heart would be considered to keep her stable whilst she waited for a heart to become available for transplant. On Wednesday 14th September Everleigh took a turn for the worst and Birmingham Childrens Hospital liased closely with Great Ormand Street regarding her care. Parents were ready and prepared to be transfered the next morning but Great Ormand Street held a meeting and at last minute said no to everything, including the transplant. They even informed us that they were taking her off the transplant list. Birmingham childrens hospital have been a huge support for the family and have since fought tirelessly to find alternative ways for Everleigh to receive the treatment she needs. Unfortunately they have had no success and as you can imagine we as a family are heart broken that we have come this far and people are willing to give up on her now. The family had previously been filled with false hope from Great Ormand Street which has now torn them to pieces. Without support from a mechanical heart or a heart transplant, Everleigh will not survive. Everleigh has shown great strength along her rocky journey and deserves a chance to prove to everyone that she can overcome this, but she can't do it without support. We can't give up on her when she is fighting so hard to stay here with us.

Every other organ apart from the heart is working perfectly and is fighting so hard to keep going. We have been told that it is very common for other organs to start failing, but not in Everleighs case yet, she is defying all the odds and fighting every day.

I set up this fundraiser initially to help raise funds to support Everleigh's parents whilst they are unable to work due to living over in Birmingham. They have been staying in hospital accommodation since 10th May. We are now trying to push the amount of money we can raise to help the family fight for their daughters survival. We are unsure as of right now which road is best to take. Whether this means looking into private care or to cover the costs of legal fees to help get Everleigh the urgent medical support that she needs. Any support we can get with funding will be put to good use to try and save Everleighs life. We as a family are willing to go through whatever necessary to get Everleigh treatment. We are unsure right now how many weeks we have left with Everleigh without this treatment, so there is an urgency to taking this matter further. The full cost right now is unknown as this will be dependant on the route taken, the aim is just to raise as much as possible to cover all expenses, every penny will be used to help keep Everleigh with us.

Mom and Dad have put off asking for help now for 4 months but we are at a loss and dont know where else to turn. They had kept this completely private until recent weeks, as they didn't want their business all over social media. Unfortunately, as a last resort, they have been left with no choice but to turn to the public for extra support to help them find a way to save their daughter. So please, if you can spare any amount of money to help, we would be forever in your debt. We just cant lose our girl.

If anyone knows the mom or dad of Everleigh, can we just ask that people don't privately message them, as you can imagine they are going through the toughest time of their lives and are asking for some space and privacy whilst Everleigh is so critical. Thank you all for reading and for anything you donate, from all of the family and Everleigh-Rose.