Hello Everyone! Thank you for taking the time to visit our just giving page, we are running the london 10K again this year for The Addenbrooks Charitable Trust, they have been truly amazing helping our best friend Chanels beautiful daughter Lorena on her journey with CDH. Please take a few moments to read her amazing and inspiring story below. Any donations for this amazing charity would be hugely appreciated.

“Lorena Reign was born 10/12/22, 7lb 2oz in The Rosie Hospital. We knew she would be taken into NICU from birth after being diagnosed at the 20week scan with CDH (Congenital Diaphragmatic Hernia) when I heard these words I had no idea what it was or what it meant for her and her future. I had gone to the scan alone after having 3 healthy children, baby number 4 scan felt like a routine check. As soon as she was diagnosed I called my husband and he had googled it within seconds and to put it simply told me "her organs are in the wrong place"

After this I was referred to many specialists and told a lot of information. The first specialist I saw took some measurements from the scan and told us your baby has a 20% chance of surviving. I broke down...

The problem wasn't so much the hole, this was 'easily' fixed by surgeons. It was the fact her lungs had been squashed by her other abdomen organs which had entered the chest cavity through the hole in the diaphragm. I was told she would be taken straight away to be intubated and from there she would need to be stabilised and only when she was stable enough would she be able to have the surgery to fix the diaphragm. From birth Lorena came out fighting!! The delivery was perfect. I pulled her onto my chest heard her little cry and we had some skin to skin. Something I was told would not be possible due to her breathing but she was pink, crying and stable enough. From there she was taken to NICU and my husband went with her. I managed to go a couple of hours later. She was stable. The team were with her and my husband and I went downstairs for some sleep. A few hours later we went back and things had done downhill. For the next few days Addenbrooks NICU done everything they possibly could to try and get Lorena better she was holding on in there but she was maxed out on everything they could possibly do for her. A consultant had been talking about ECMO to us since her birth and he was in talks with GOSH and Leicester hospital about an ECMO bed for Lorena. We knew from reading ECMO was the last resort and worst case scenario for her condition. Lorena then had a dip, she was telling us she was struggling. GOSH were then called to come and transfer her to get her near to an ECMO bed. They came and spent 4 hours trying to keep her stable enough for transfer. It wasn't possible. We then spent the next 24 hours waiting for the Leicester team, the longest 24 hours of my life. They were the only mobile ECMO team in the UK. Finally they arrived. I ran up the stairs and met the consultant and I instantly felt at ease. ECMO comes with it's own risks and half of babies who go onto ECMO do not survive, It was a risk we had to take as there was not other way. The consultant was confident and he had faith in Lorena. He told us she had shown them signs of fight and that's why they were there. To qualify for ECMO not only do you have to be a certain level of poorly you also have to show signs of being able to make it. Our baby girl was fighting.

Finally she was in GOSH. When we arrived to GOSH they told us they would be 30 minutes getting her settled. I sat staring at the door for 4 hours until finally a nurse walked past and said "She's OK"

Lorena the spent 12 days on ECMO during this time there were complications, she had emergency procedures, blood clots in the circuit and everything that could arise as a problem arose. The flow stopped on the machine and the emergency procedure had to take place. The nurses and Dr's were simply amazing. She got through this and after we were told they had to do a brain scan due to the blood flow problem, if there's a problem with the flow it of course stops getting blood to her body including her brain. The scan came back clear. Everyone was astounded.

The day Lorena came off of ECMO it wasn't in the plan. They had clamped her off due to more complications and during this time she held her own. They decided to keep her off at this point due to the difficult time she had had on the circuit. The next 24 hours were crucial. But she kept going and kept strong! Lorena finally had her surgery on January 4th. Throughout surgery they told us she was rock solid. They told us she had no diaphragm at all on her left side, hence why she had been so poorly and the fact she had made it this far was incredible. Slowly day by day Lorena was getting stronger and she was transferred back to Cambridge on January 16th.

Since then she has been flying through milestones and was finally extubated on January 24th.

She is now on low flow oxygen and every day closer to coming home. The first 5 weeks of her life she fought every single day and we couldn't be prouder of our beautiful baby girl and how far she has come. We have chosen to donate any money raised to The Addenbrooks Charitable Trust. The first 3 days of her life stabilising, and and effort put in to pushing for an ECMO bed for Lorena were crucial to saving her life and how far she has come. When returning everyone in NICU was so so pleased to see her back in a better way and nursed her to health. We will be forever grateful for everything they have done for her and everything they continue to do. They are real life angels.”