For those that have newly started following our story this is Lexi Amelia Mace. She was born on 15th December 2017 and weighed 6lb 2oz. Hardly anyone asks that, what she weighed. What colour her hair was or why we named her Lexi. The usual questions you become tired of repeating the answer to when you have a baby, we never got the chance. Lexi lived for just over 39 ½ hours. Sepsis killed Lexi and our opportunities to proudly show off our beautiful baby but an incredible out pouring of love is helping to keep her memory alive.
For someone so small, she has made, in such a short space of time an incredible impact on so many lives. Andrew and I are incredibly proud of Lexi for inspiring people to, in so many ways donate time, money and hope to the families who pass through Great Ormond Street Hospital.
Last week we returned to GOSH to discuss how the money raised in Lexi’s fund can be spent. It was an opportunity to learn more too about why fundraising and charitable donations are so vital to the hospital. Every year the hospital receives £400 million through the NHS. And every year the hospital needs to raise between £80-100m. The money from NHS does not fund some of the vital services the hospital provides. Charitable donations fully fund the research, parent accommodation, play therapist and chaplaincy services and many more.
When you are donating your money to charity there is always questions in mind over how that money will be used. It was really good to learn that every penny raised into Lexi’s fund will be ring fenced for being used on specific projects and areas we choose.
When a bed was found for Lexi at Great Ormond Street Hospital and we rushed through the early hours of the morning to London we had no idea what to expect. I had seen a program on the television many years ago filmed at GOSH and the name is synonymous with excellent care. I’ve spoken before about the vast team waiting to treat Lexi. I find it truly remarkable that a team of surgeons were waiting for our arrival to operate on her in intensive care. A ecmo machine, of which there are only 3 in the country was ready waiting to be used. There were specialist ecmo nurses, consultants, surgeons, theatre nurses so many people all standing by to save Lexi. The equipment available at their finger tips and the amazingly skilled staff waiting to use it meant Lexi really was given the best opportunity to survive. And when there was nothing more that could be done the staff on Flamingo ward that morning, shared in our heart break.
Flamingo ward is one of the cardiac intensive care wards. In January 2018 Great Ormond Street Hospital opened a new ward, Alligator Ward. This is a specialist cardiac ward with intensive care facilities that will care for some of the hospital’s most seriously ill patients. The children cared for on alligator ward may need close monitoring or breathing support for conditions affecting the heart, lungs and airways.
GOSH is the largest centre for child heart surgery in the UK, and one of the largest heart transplant centres for children in the world. Since the heart transplant programme began in 1988, more than 540 heart and/or lung transplants have taken place at GOSH.
Alligator Ward provides extra capacity for these patients, reducing waiting lists and getting more children the vital treatment, they urgently need. We were incredibly lucky the night Lexi became ill that there was a bed available in Flamingo ward and the new ward will allow for more beds for seriously ill children like Lexi. By seeing more children with serious heart conditions and those awaiting transplants, clinicians and researchers at GOSH will have more opportunities for research, driving forward innovative treatments and pioneering new devices that could save lives.
Andrew and I felt that Alligator Ward is a perfect place to donate funds from the money raised in Lexi’s fund. If we are able to raise enough money for the ward the entrance to Alligator Ward will display Lexi’s name, in memory of her and all those who have raised money to her fund. I think one of my greatest worry as Lexi’s mum is that she will be forgotten by others. We will never forget our beautiful daughter and having her name outside the ward may seem a small thing to some, but it will mean her name will never be forgotten by others.
We have always been ambitious in our fundraising goals and set our sights to £39,320. To give you an indication of how that money will be spent in the paediatric and neonatal intensive care expansion here are some examples of the staggering costs of some pieces of equipment;
- ICU monitors @ £13,400 each
- IV pumps @ £1,000 each
- Portable ventilators @ £18,000 each
- Syringe pumps @ £2,000 each
- Transport monitors @ £9,000 each.
I was worried about returning to Great Ormond Street Hospital but the fundraising we are doing is going to help so many children in so many ways. We were incredibly proud to handover a cheque for £7,094.40 to GOSH last week. We presented the cheque in GOSH’s new Disney Reef. It is an amazing space for the patients at GOSH to play. We look forward to returning many more times to present larger cheques and to see the amazing work being carried out with the money raised.
Tonight at 8pm on ITV1 you can see GOSH in action in Paul O’Grady’s new program, Little Heroes. You can see first hand how vital the money raised is for the hospital.
Thank you to everyone that has donated so far to help us reach our current total of £7,244.40. You can see more about our current fundraising events here – https://www.justgiving.com/remember/547691/Lexi-Mace.