Hello, I am Victoria, proud mummy to Lilibet, Sebastian and Edie.. This is a little long, but I hope you can read to the end to help us make a difference to our two little miracles lives.

One month off two years ago, we found out we were having a baby. We were shocked, but over the moon all in one. Five months later at the check up scan, every other thing so far being ok, things took a turn. Our baby girl was not OK, but we didn't know why. Neither did the hospital. They couldn't even say what they thought at this point. Or throughout, in fact.

We were told from this point onwards that our baby girl would more than likely not survive birth, due to her heart being 'anatomically incorrect' and other brain issues present. Everyday we waited as we were told she would reach fetal demise most probably before term and to expect it. They couldn't figure out how she was surviving from what they were seeing on the scans, but her blood flow and blood pressure were always spot on. She moved all the time, they said she shouldn't and they wpuld slow down, they didn't. They scratched their heads with multiple people wondering why this unique, fantastic little human being was going against everything anyone said and was surviving it all. We were offered termination, due to the fact that if she survived, how long they do not know and said she would be so severe she would need open heart surgery when she was born to keep her alive amd would be severely disabled for the rest of her life, but they couldn't say for certain. :/

Devastated, each day we tried to plan and get excited, we were also living with this fear and nightmare veryday that we were building ourselves up for nothing because we would lose little Lilibet. It was such a difficult time and nobody could give us any answers. We couldn't give our son any or get excited when he did.

Telling Sebastian when we did at three months, felt like the happiest moment to be able to tell him he was going to be a big brother. Everything seemed fine at the twelve week scan so we were so overjoyed to be able to tell him. So when things took a turn our hearts were extremely heavy to know that we may have to face the difficult decision of giving Sebastian heart breaking news. Whenever he asked questions with excitement my heart was crushed.

We had genetic testing, which looked into our 23 pairs of chromosomes (dad and I) Dad was all good and I guess you could say I was.. but when we had our chromosomes tested, two segments of mine, numbers 12 and 21 just a partial amount, have switched places with each other. This is called a balanced translocation. As all of my genetic material is in place, nothing is lost or gained, just switched, that means I'll be OK. When you have a child and you have a balanced translocation, you have a 50/50 percent chance of having a child with an unbalanced translocation, (too much or too little genetic material) which causes massive delays and health complications in children so unique as Lilibet, OR, you have a healthy child with normal chromosomes or a balanced form like myself. We are not certain with Sebastian and won't be until or if he ever decides to know himself when he is 16 (NHS rules not ours).

When we found this out, we were crushed. Crushed because we were told the information as though it was the whole chromosome. Only partial is affected with Lilibet, but this wasn't really fully explained to us properly at the time, so her prognosis was not only not understood even medically to doctors, but her prognosis was poor from the word go. We were told she has trisomy 21, also known as down syndrome. Lilibet does have a partial form of it, it isn't trisomy 21 as we widely know down syndrome, which is in 95% of people with down syndrome. She is in the other 3% of a rare form, called a recipricol translocation and the other 2% people can have is mosaic down syndrome, where only some cells are affected and some are not. She has other unique things going on with chromosome 12 involved also.

Lilibet has a partial reciprocal translocation 12:21. It is not downsyndrome solely as we know as her chromosome 12 is playing a part in her little personality and who she is as a person and the health problems and unique things she presents to us day in day out. Everyday is massively different as doctors have never medically ever seen anything like this before. The 12 part is unheard of. They have been unable to advise and that has been the hardest thing for any parent to ever have to go through other than hearing "she won't survive" or " We don't know" everyday . She has avoided two heart surgeries now, as whem she was born we were told that all was not what it seems with her heart and she will be OK.

From being told Lilibet would not survive, I had an emergency section as they feared a natural birth would be too much strain on her little heart and fast forward one year and two months our little girl has smashed her first birthday and is hitting milestones we never ever thought we would be lucky and blessed enough to see her do. The not knowing for all of this until about two weeks ago and being told that actually, she will survive, she will be OK... our little girl just needs time and love. We couldn't believe what we were hearing after always being told we don't know to anything and everything we asked. Our lives have been a continuous nightmare, not knowing if you will lose your child or get that dreaded call when you can't be there or get there. No parent should have to feel grief like we have. Our family has never felt whole since, we want to be together at last and comfortable for our children.

My partner has unfortunately lost his job twice throughout all of this due to our current situation of needing to be at the hospital when ever we can be or need to be and I had to stop my plans of starting up my personal training business again at this moment in time, that's totally ok, but it's really difficult. Life just can't feel as normal as we would love it to right now, but hopefully with your help, things can get a little easier, especially for our children. We have massively struggled to make ends meet at times and it has really tested us and our emotions as a family. Time and endless days at the hospital with awful situations and endless not knowings, has made us wonder, why?! Why?! why?! but everyday I don't know what I'd do without my family and they get me through.

Sebastian says how our life has changed since all of this and when you hear him tell people or even to us, mummy and daddy, that we don't do this anymore or we can go here anymore or have fun anymore, it's really difficult to take that in, when you know that wasn't the life he had before or you ever expected him to have so young :(. We want to put a bit of stability back into his life and raise money to be able to get to our goal a little quicker, with your amazing help.

Our son Sebastian has suffered the most throughout all of this. We can kind of process this a lot more, he just can't being so young as much as you try to explain, you still know he's only a baby still. He has been a trooper and the usual days out, holidays, family time and that normal life has been switched for a 'day out at the hospital' for nearly two years now. Not driving has been a massive strain on how we get to the hospital and endless says of 1-2 hour bus journeys each day was hard, but that little trooper did it all!! He should never have had to see what he has so young, something I always tried to protect him from. He really misses normal life he says and that breaks my heart that I

We are not in a position to do that right now. He had days of school affected and lack of car transport has really been a difficult task for nearly two years now.

Life is really difficult at the moment and we want to be able to give something back to Sebastian for how amazing he has been and to Lilibet for going through what she has! The walking Sebastian has done for mummy amd daddy when we couldn't get there any other way but walking, bus, taxis and trains. We want to try get a little bit of Money together to be able to buy a little run around car, so we can take our little dude anywhere we want to go and for peace of mind for future hospital appointments for Lilibet as we were told that she is finally coming home!! We want to give our children something back for being absolute angels throughout all of this. Both Lilibet and Sebastian. We are still living this nightmare everyday until she comes home and it's still scary that in not even a day it can all change.. but we want to give back to our kids in a way that just isn't possible for us to be able to do right now, we really would love to be able to raise money to give Sebastian and Lilibet a thank you to remember. Sebastian has lived a couple of years of seeing his sister in hospital and his mummy going to hospital alot. To be able to do something for him and give something back with your help would mean the absolute world to both dad and I.. and most definitely Lilibet and Sebastian.

Getting there or not being able to get there when we need to especially with children, is difficult. This has been a massive hindering on our situation and now we are living too far away and currently pay £20 in taxis there and back per day.

We are staying in Ronald Mcdonald house at the moment next to alderhey as Lilibet is now taking steps towards coming home! This is a temporary stay and we still have pur home, but with this now finally looking promising, we need to make sure we are at the hospital more. Providing a little more financial support for our children would be fantastic right now. While we are next to the hospital it is extremely difficult getting between the two for Sebastians school each day, so has unfortunately recently started to tale a bit of time off due to us being unable to get him there everyday, the school have been very supportive of pur situation, so a car would be brilliant we wouldn't have this issue. We also want to try and give Sebastian a day out or something to take his mind away from all that has happened over the last two years. No six year old should ever have to experience what he has, he is our hero. They both are.

We want to give something back to Sebastian and Lilibet and we hope with your help, big or small, we can get there. Equipment for Lilibet and things to help Lilibet with having a more comfortable time at home and on days out, being able TO take her out is something we really need for her to thrive and grow as best as she can.

I'm sorry this is so long, there's so much more to our story, I really just wanted to give you all as much information as I can and a little insight to the struggles we have faced and how with your support, we can get to where we need to a lot quicker with your help. I really hope you can help us to create an extra special happy ending to this nightmare for our children.

Any money that is raised will go towards Lilibet and Sebastian and a better future for our little miracles. This has taken a lot of time to bring ourselves to write and hasn't been an easy decision to make with a lot of thought going into it, but we really do believe and hope that with your help and support, you can help us to make a difference for our children, for the better and for their future to be much brighter amd carefree. We want to make a start towards that anyway!

We hope you can share or reach out to anybody you know to help us reach our goal for our babies, no matter how long it takes. Any support is massively appreciated throughout this extremely difficult situation we are facing as a family.

Thank you to every single person in advance, your support is massively appreciated by us all, you don't even know how much this would do for our babies after everything that has happened.

Love to all xoxo

Victoria, Harry, Sebastian, Lilibet and Edie x