This is Ella-Rose, she has just turned 3 and is the most inspirational little fighter I know. When she was born she was taken from me almost immediately due to loss of oxygen, her lungs kept collapsing and less than 24hrs hours after birth, 4:30am i was rushed to ICU because they didnt think she was going to make it. I watched as they fought for her life and she fought too. Luckily the doctor was amazing and found a blockage in her airways, but the next two weeks were touch and go until she came home.

Due to being born with a full hole (full AVSD) in her heart she then struggled for the next three months with tiredness and was not putting on much weight, but at 4 months old she was taken to have her heart surgery, she was due out of theatre at 1pm, 4 hours later she was still in and didnt know why, an hour later i was certain the doctors where coming to tell me she‘d died, a feeling i never want to go through again, this operation is one that most babies are in and out of hospital within a week. Well not my little diva, the same night we were told she had a 50/50 chance of life and death, the next few months were touch and go and Intensive Care became our home, thanks to the wonderful team in Alderhey and her fighting spirit she survived and came home at the end of May, this was to start mine her and her then 6yr old brothers life together growing and playing and having fun. It was now time to start to teach her all the things that she had missed, but the world had other plans; I had noticed her eyesight didnt seem right and after a visit to the hospital at the beginning of July she was diagnosed with focus delay, so she couldnt see the world properly everything was blurred which meant lots of visual phsiotherapy which tired her out and I was told it could take years if ever to get her to see, 4 weeks after that she started having infintile spasms and was later diagnosed with West Syndrome (a rare form of epilepsy) and true to Ella-Rose’s form the medication took a long time to work, by which point the steroids had made her put on masses of weight (going from being an underweight baby to massively overweight) but we had to get her spasms under control. I was told her progress could regress too. So at this point she was well over weight and just moving her arm became a struggle for her, leaving her completely immobile and meaning she needed to be taught everything to get her mobile, this was a struggle as she needed to strengthen her muscles to be able to move her new body weight. But 2 years on and I have a little girl who wants to learn, enjoys playing and loves it when she learns something new and gets lots of praise. But because she is so big now and so heavy she needs lots of specialist equipment to help support her weight and size to help her develop, she is still immobile and can’t roll over or sit unaided but she will with the right help. We have been failed by social care who should have provided a specialist high chair back in May which alone costs £1800, without this my daughter is constantly at risk of choking, she has no where to play and although shes desperate to self feed i cant let her because shes not safe. She needs a standing frame to help teach her to weight bare and help strengthen her trunk and legs, she needs a specialised car seat that will give her postural support but will also turn so I can get her in and out of it. She needs toys that teach her cause and effect. She needs a bed that goes up and down and raises her upper body for when her breathing is bad so shes in the correct position, but also so I dont keep pulling my back and shoulders getting her in and out. She needs a walker to help her learn to get around. She needs swimming supports so i can take her in the water safely which she loves to do. She needs a supportive buggy that she can also sleep in and I can get in and out of the car easily, there is an amazing opportunity for her to get one to one support to strengthen her entire body and give me the tools to help her (no-one trains the parent), the list goes on and on. The time it takes to get the money together means she misses months of opportunity to learn and develop and then I have to go back through OT’s and reps to double check sizes and makes and models which takes a few more months. It becomes a vicious circle. Its now also impacting on my 9year old son as we are limited to what we can do, if im injured from carrying Ella-Rose around it impacts on him, its getting more and more difficult me getting her in and out of the car so i try to reduce my journeys, he so much wants to be able to play with his little sister but its difficuly at the minute because to do anything with her you have to be able to support her and try and play at the same time.

I’ve always put off doing this because i feel guilty asking other people to help when everyone has there own things to pay for, but i‘ve now come to realise if i dont find ways to raise the money needed the only person i’m hurting is my little girl who deserves the world, and her big brother who is going to have to miss out on his activities for me to be able to save for her equipment. I cant tell you how it effects you mentally when you feel pulled between your children but neither of them expect or ask for anything. How you feel a failure as a parent because your daughter is missing out on the chance to flourish because she hasnt got the tools to learn. Because as a mother the only way i can get my daughter the things she needs right now is to ask others to help us. The everyday worry not knowing how much longer i can physically carry her around and then what happens next? What happens to my little girl if i cant pick her up, because currently i cant get her between rooms without doing so. Her high chair alone will make a massive difference as its on wheels so she can be wheeled between rooms and can eat and play in it with the correct support