Warrior of the Week

Introducing our Warrior of the Week, the delightful Luna. Here Bex one of our UKIST team tells you Luna’s story in her words.

Here is my lovely Luna. Luna was a dream come true for me and my husband. We had been trying to concieve for a few years but she came into our lives like a whirlwind. After a few attempts of trying to write Luna’s IS journey for Warrior of the Week, I have decided to focus on the positive things that have happened. (Mainly because it is still difficult to think of that awful time in detail). Luna was a happy and content little girl but unfortunately that changed a few weeks before her diagnosis of Infantile Spasms on 19th September 2016, at 4 months of age. Even though it took a while for Luna to get a diagnosis we were lucky that since then we have had amazing support. She has a fantastic Neurologist – Dr Hussain is one of those guys where you can see the kindness in his eyes. From day one he has always taken time to explain things in detail and made it clear that no question was too silly. When you are in hospital with a baby (over any period of time) you see the world in a different light. You’re so scared of the future, but you have to take strength from the good days – equally there are days when you just cry. The lovely nurses at Leicester Royal Infirmary got me and my family through that terrible time – particularly Tara and Kim. They were with us every step of the way. Luna was treated with Prednisolone and her last seizure was on day 8. There were a couple of times during her treatment and wean that we thought she had relapsed, but each time the EEG came back clear.

The team at the hospital have all been amazed with how well she has overcome each obstacle with a smile on her face. She is due her check up appointment on 23rd September and as a family we are eager to show her Neurologist just how well she’s doing. Not only have we had a tremendous amount of support from our family, we have also gained the IS Family. Finding the support group was and remains a massive help to us and it’s great to have a safe place where you can share your worries with parents who know your fears, in addition to sharing milestones and achievements – no matter how big or small they would be to non IS families.

One year on, my lovely Luna amazes me everyday, she’s hilarious, happy and has the biggest smile. I’m so proud of her, but I’m also proud of the wider IS Family who overcome hurdles on a daily basis, share their knowledge and give hope to others.

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