No tears for Tia – she’s fighting back!
As I relive this journey the tears still continue to roll down my face and the pain in my heart is like no other.
It was a cold October morning in 2010: Tia-Grace, 10 years old, got up feeling absolutely fine and was running around the house as she always did, full of joy and laughter. Tia-Grace adored shopping and asked if we could have a girlie shopping trip. As always, I did what Tia-Grace wanted to do so we got ready and set off to hit the shops with her words forever in my memory… “Let’s shop till we drop mummy!”…….and that is exactly what Tia-Grace did! One minute she was walking beside me and the next she was holding onto a counter with every ounce of colour drained out of her. “I feel like I am going to faint mummy,” she said, which was bizarre as Tia-Grace did not know what fainting felt like, but she knew her body was ready to fall. I screamed for help; an assistant who had a little first aid knowledge came with a glass of water; I guided Tia-Grace to a chair to sit her down. She looked awful and was so lifeless. Eventually I carried her to the car and got her home. She lay on the sofa and just wanted to sleep. I was hoping it was just some kind of bug as there had been several children away from school with various things.
The next morning Tia-Grace seemed no better so we took her to the local hospital – only to be told it was a virus, let her rest and give her Calpol! Over a period of two weeks I returned her to the hospital A&E NINE times, constantly being told it was a virus and to give her Calpol. On each visit I saw a different Doctor and on one occasion overheard a doctor say, “There’s nothing wrong with the child, the mother is just over protective.” Such a statement was heart breaking as I had never taken Tia-Grace to hospital prior to her becoming so unwell, and it was at that point, behind the cubicle curtain, that I started to cry. I knew my princess was so very sick and it was no ordinary virus. Even though she could barely stand, had not eaten for over a week and had had very little fluid, owing to her bloods being fine no one was bothered and no one bothered to look into it further.
On our last visit I refused to leave so Tia-Grace was admitted, but it was very clear they thought nothing was wrong and I was wasting everybody’s time. Tia-Grace was sent for a chest X-ray. The doctor, without even looking at me, said, “ See it’s clear!” I refused to accept it was just an everyday virus and requested an MRI. After a little battle, the doctor agreed – but told me there was a waiting list! When coming out of X-ray we bumped into a doctor we had previously seen, who got an MRI done within a few hours. When the results were back the ward doctor informed us that there was inflammation on the brain, but this was nothing to worry about and he would give her a small course of antibiotics.
Within a few hours Tia-Grace went downhill so quickly, to the point where she could not breathe by herself. She was rushed to theatre and was induced into a coma. I remember saying to a doctor, “Please tell me my baby is going to be ok.” The look on her face will never leave me, she took my hand and replied, “I can’t answer that, but we aredoing everything we can.” The fear in my heart can never be described and this is where our lives changed forever! Tia-Grace was transferred to St George’s Hospital, Tooting and remained in a coma for SIX weeks. We sat by her side 24/7 and I continued to do the things I had always done like painting her nails, doing her hair, making her look as beautiful as she always did. I spoke about thing we had done, places we had been, and gently sang two of our special songs, one being ‘You Are My Sunshine’ and the other being ‘Mysterious Girl by Peter Andre. It was the latter that I believe brought my baby back to me and she has hung onto that song ever since and has even sung it to Peter himself. He has been totally amazing with Tia-Grace and without him I feel Tia-Grace would have given up a long time ago as he was, and is, her never-ending rainbow.
Tia-Grace came out of the coma as beautiful as ever, though you could see she was terrified. She could not walk or talk; her swallowing had been hit badly and along with being totally paralysed, she could no longer eat. The information from the doctors was that she might never do any of the above again, and once off life support, she was still unable to swallow and had a tracheostomy for 13 months, along with a feed tube in her tummy.
Tia-Grace was diagnosed with ADEM and we were informed that TEN areas of her brain had been hit. Tia-Grace was still completely paralysed when I overheard a conversation regarding her. A medication was being refused as it was too expensive. The medication in question was IVIG. I immediately demanded to see someone in authority as a medication that could help my princess was being refused, owing to cost. I could hardly believe what I had heard and was determined, even if I had to fund the medication myself, that my daughter WAS going to get it! It goes without saying that l should never have heard that conversation so they really had no option but to give it. The request went before a board and it was granted.
The IVIG turned things around, as within 24hrs Tia-Grace had movement in her fingers. The more medication she was given, the more she moved – and this was the start of her recovery. We remained in hospital for the next six months, fighting ‘The System’ every step of the way. No one understood what Tia-Grace needed, so I eventually took on all medical care myself: first aid, Physio, medication, education, gastro feeding, along with Tracheostomy Training. Finally we were allowed home, but after two days Tia-Grace did not seem right. I took her back to St George’s only for it to be confirmed that she had had a relapse – and there we remained for another 4 months.
This time the journey held a devastating diagnosis. Medical staff were confused over Tia-Grace and I am sure if it was not for her consultant and the Paediatric Neuro Team at St George’s, Tia-Grace would not be here today! Dr Penny Fallon, Tia-Grace’s Consultant, worked round the clock to find an answer and thankfully, whilst she was attending an event, she mentioned Tia-Grace to another overseas doctor. He looked at her and said one sentence: “Check her Aquaporin 4!”
First thing the following day, she set the wheels in motion. The test was done, the result was “Positive” and the condition ‘NMO’ was explained to me. The words were all fuzzy. I could not take in what was being said. Things like this didn’t happen to people like me. Tia had never been sick – they must have it wrong. But I knew what I was hearing was true. I felt numb, I felt broken and I felt so very scared for the most precious thing in my life – my Tia-Grace. This was when I asked the doctor if there was anything, anything at all that they could take from me to save Tia-Grace, even if it meant losing my life. All I knew in my heart was that I had to try every avenue to save Tia-Grace no matter what. To my devastation the answer was no, nothing at all.
Tia-Grace, over the next 18 months, was on various medications, plasma exchange, IVIG, Azathioprine to name but a few – and tests were never ending. However, after a relapse, she was put on MMF and thankfully remained stable. She had double vision, had gained so much weight owing to 2 years on steroids, and her life had changed enormously forever. She had lost most of her friends, could no longer go to mainstream school owing to her brain damage, could not go out alone as she was now so vulnerable and had poor memory.
I sincerely believe if medical staff from the start been aware of NMO, Tia-Grace would have had a different outcome and would still have an almost normal life. Sadly that will now never be – and to get Tia-Grace to where she is today has been such a hard journey. Community services have no idea what a person with NMO needs; the Education system has no Idea how to accommodate children with NMO. Tia-Grace attends an SEN school as she could not keep up with Mainstream but she certainly does not fit in at a SEN school. Like everything else there is no middle ground for anyone suffering with NMO, owing to the lack of knowledge of this awful condition.
Our journey has been so very hard, battling every area: our local borough refused to fund a rehabilitation centre, they refused to adapt our bathroom unless we had all disabled fixtures which certainly would have been soul-destroying for Tia-Grace, as we needed to keep everything as normal as possible to encourage her not to give up. SALT was refused even though she has a tracheostomy and an unsafe swallow, and after a great battle Physio was granted for 15 minutes fortnightly.
Even as I write, my GP refuses to prescribe Tia-Grace’s medication of MMF as, in his words, ‘It’s too expensive’. How can a lifesaving drug be refused to anyone because of the cost, but thankfully again Tia-Grace’s consultant prescribes the lifesaving drug for her. in Tia-Grace’s words: “ Dr Fallon is my Guardian Angel”.
This is only a brief outline of our story as so much has happened owing to lack of awareness of NMO, and I still believe to this day that had medical staff been aware of NMO during the first two weeks when Tia-Grace started to become poorly, the inflammation would never have hit her brain so badly.
As anyone with, or caring for a person with, NMO will know, every day is a blessing and will have learnt very quickly to turn each negative into a positive. Tia-Grace has done some amazing things, things that give her the courage and strength to carry on. She has been to Lapland, Disney in Florida, been up in a Helicopter, spent the day on the Thames on a luxury boat, attended a Ball as an ambassador, opened the children’s playground for poorly children at St George’s Hospital with Mark Owen from Take That, spent time in Florida with Rachel Stevens from SClub 7, and attended the VIP after-party. She has met Mark Wright, the Duchess of York, various boy bands, the whole of the TOWIE cast, Katie Price, and been awarded a Blue Peter Badge, won a Jack Petchy Award for outstanding achievement, a Mayor of London sports award, had a private dance class with Diversity, danced on stage with the cast of Hairspray from Showdown Theatre Arts school.
Eight months down the line and after a three-hour audition Tia now attends once a week and will be performing in a stage performance Of Bugsy Malone at Woking Theatre, Surrey. At present she is waiting for a date to meet Will-iam, but the one thing that has given her a purpose and brought back her “ Million Watt Smile” is without a doubt Peter André. She has meet his adorable parents, his lovely children, his wife and his manager Claire Powell. He has been outstanding with Tia-Grace and has meet her on so many occasions, making her feel so very special every time. He is not only Tia-Grace’s Never-Ending Rainbow, he is mine too as he has given her more hope than he could ever imagine.
In the spring of 2015 a friend of Tia-Grace’s dad, John, contacted me, explaining that he wanted to do something to help Tia-Grace and had decided to do a charity fund raising challenge. He wanted to know where we wanted the funds to go to. I was not aware at the time of the charity Tony and Tricia had set up owing to Tricia’s own awful journey and NMO. However, after searching the internet and seeing the word NMO Research I knew in my heart that that was the one I needed John to donate the funds to. At that point little did I know how these people would change my world forever.
I no longer felt alone – there were actually people out there who understood Tia-Grace’s condition. As time passed I learnt even more that I was not alone by reading other people’s questions and answers. Yes I read things that I wanted to block out, but from the day Tia-Grace was diagnosed I have researched NMO endlessly, not only to know the negatives but so I understand and can work with Tia-Grace and understand everything I possibly can to make her life as perfect as possible. The charity has truly been my life-line. There are people I have never ever met yet I feel that they are a big part of my world and have got me through some very low times. I wish I had been informed of the charity much earlier as I was so alone, feeling that no one on this planet understood what was going on in our life. Like everything else connected with NMO, how could any professional inform me of such a charity to give me support when such a high percentage of the medical profession have never even heard of the condition!
I will never be able to Thank Tony and Tricia enough for dedicating their life to start the charity because of their own personal journey, as without them I would truly be as alone as I was on the day Tia-Grace was diagnosed – and that was a very dark, lonely place. What the future holds in store I do not know. I know it has had a terrible impact on our life from everyday things, to my personal relationship with Tia-Grace’s dad. I wonder what the future will be like for Tia-Grace. Still every morning I open my eyes and for a split second I think it’s just a bad nightmare, but a split second later I realise this is reality and my eyes fill with tears. Words could never express my fear anger and hurt that my precious daughter who was so intelligent, so popular, who had her whole future ahead of her had had it all ripped away owing to the lack of awareness surrounding NMO. Without that, they could have given her a chance of normality.
We meet up with the team from Oxford once a year and on our last visit they were amazed not to see Tia-Grace in her wheelchair. Her blood tests have been moved to once a year and her levels remain negative. We are due another MRI in March to check whether there has been any change, as changes do not always mean a relapse.
I have worked endlessly to bring Tia-Grace where she is today and I am so amazed that somehow I was strong enough to Never, Never, Give Up as I still have my beautiful, amazing Tia-Grace. She now walks, talks, eats, goes to school full time, has the most amazing, funny sense of humour, and leaves a magical impact on every single person she meets.
Even though in many ways we have been let down so badly by the lack of awareness of NMO, and the future frightens the life out of me, my Tia-Grace still manages daily to show me Her “Million Watt Smile” and that for me, as her mummy, is totally priceless.