This is Dawn Finn’s story, the mother of Liberty Rose.I was so excicted to be pregnant, but nothing could control the excitment when I went for my 12 week scan and we found out it was twins, I went for my 20 week scan and to my joy – two girls, two of every outfit – they would have to wear the same!!!

The twins were born on 14 December 2006, two healthy girls, Destiny 4lb 10 and Liberty 4lb 14, we were over the moon, I couldn’t have been more happy – my family was now complete! When the twins were about 6 weeks old, we noticed that Liberty was different, her eyes would roll into the back of her head and move rapidly from side to side and with age got dramatically worse, she also suffered from severe vomiting, children would say “why is Destiny a normal baby, and Liberty looks funny” it hurt, god it hurt I couldn’t see that my Liberty was any different (although I could). We took Liberty to the Doctors Surgery and went home as the GP had said she is OK, shes healthy and to come back if we were concerned.  We didn’t feel happy with this comment, but you trust a GP.  We spoke with our Health Visitor, who watched Liberty’s eyes and said she too was not happy and would refer her to an Eye Consultant.Eventually after much pushing for an appointment, we saw the Eye Consultant at Derby City Hospital, who took one look at her and said she had Nystagmus and would have an MRI scan, we were so upset and went straight home and looked this up on the Internet, at this point we new she may have more wrong with her, but couldn’t prepare ourselves for what we were about to find out.One day both the twins had summer hats, and literally in a few days, Liberty’s no longer fit her head and Destiny’s did, we again took her straight to the Doctors Surgery again, and demanded an urgent MRI scan (to which we was still waiting for) our GP worked so hard for us that day (a man whom will always have great respect from me) and we actually got an MRI scan within days.  I had  read on the Nystagmus website ”brain tumour” and at this point I just knew it, everyone reassured me but I knew, it wasn’t women’s intuition – it was much much more, all we could do was wait now and the waiting game was horrific!After the MRI scan we received the phone call to say that Liberty did in fact have a brain tumour, I will never forget this as I was working at the time and had told Carl (my husband) to call me no matter what, Carl had to phone me at work and tell me the devastating news – I dropped to the floor and handed my phone to a colleague, I couldn’t take it in.  I got straight in my car and drove home, how I did Ill never know.  I got home and just held my Liberty and cried and cried, there was nothing that I could do for her to make her better!We was referred straight away to Queens Medical Centre, Nottingham where Liberty had a further scan that revealed it was much bigger than we first though, it was wrapped around both of her optic nerves and was sending her blind.  The Brain Surgeon met with us and explained this tumour could never be removed  due to where it was situated as it would send her blind – all they could do was give her chemotherapy to manage the tumour and save her eyesight.  The Brain Surgeon also told us she would need to perform brain surgery to take a tiny piece of the tumour for a biopsy – I really couldn’t take this in, brain surgery on a 9 month old baby.We went into hospital in September 2007 for the operation, the morning of the operation I woke up in a camp bed next to Liberty’s cot and couldn’t stop crying.  A nurse, me and Carl took her to theatre, I held her in my arms whilst they sedated her, I kissed her as I left – she was now asleep.  I left theatre and had to wait a gruelling 8 hours before they said we could collect her – the longest 8 hours of my life.I went with Carl to collect her from theatre, bandages covered half her face, I cried my little girl just looked so ill now.  She slept for the rest of the day and when we woke in the morning her eye was so swollen from the operation and she could still crack a smile – she must have been in so much pain!We was discharged from the hospital on the Thursday and was told to go back in the following Friday to have her central line (wigglys) fitted into her chest - yet another operation, she had barely got over the last one.Everything went well and we went home that day, as we were due to start chemotherapy on Monday.We arrived on Monday 8 October 2007, to start chemotherapy, she had chemo for the next 3 days and we went home.  On Friday she started to be extremely sick and started to refuse food and drink completely.  We had to go back every week for chemo, but by the 3rd week she had lost 20% of her body weight and looked so ill, she had no energy to hardly move.  The Doctors promptly admitted her to the ward, she was put on TPN (basically fluids and fat) IV, she also had an NG tube passed through her nose and me and Carl fed her by this – but what ever went in just came straight back up – we were fighting a losing battle but every hour we fed her like this.Eventually after 6 weeks on the ward and celebrating their first birthday on the ward they let us go home, she was still weak and now her twin sister Destiny was doing so much more than Liberty could do, the intensive chemotherapy had finished now and Liberty was to have two chemotherapy drugs and not three.  Eventually the sickness stopped and she started to be more herself, although she couldnt even sit alone, crawl or roll over at 13 months old. We started to live a normal life, adapting to Liberty being so behind and the regualar visits to hospital.We went for Libertys 2nd MRI scan in October 2008, we had to wait 2 weeks before we got the results for this.  We arrived at the appointment for the results, my heart beating, hands sweating and felt like walking off as I couldnt stand to be told it had grown – but it hadnt the tumour had gone by about 80% and we were over the moon.  “We still have 6 months left of chemotherpy this tumour could go”, we were so positive - even though in the past our Consultant said it could never go completely.At this point we are 2 months away from finishing chemotherpy and she is doing so well, she now can walk and has started to say a few words.