Just over a year ago, it was a Fri evening and Anya was getting up from her potty after doing a wee. From the corner of my eye I saw her urine looked pretty dark. I hadn’t been home all day so my initial thought was she hasn’t had enough to drink. However, my gut told me it was blood. I waited for another toilet visit and watched her go for a wee. To my horror her urine was dark, almost the colour of Coca Cola, my heart sank and I called 111.

The next two weeks consisted of hospital stays and countless blood tests. Her consultant in Cambridge, Dr Birgit Ulbrich a highly knowledgeable and risk averse Dr took the step of ordering blood tests which were not normally carried out on children. She conducted an ANCA test which detects auto immune disorders. Anya’s results were almost 10 times higher than the expected level for an adult. We were then referred to the Queens Medical Centre, Nottingham where specialist paediatric Nephrologists are based.

4th Dec 2017. My little girl, my 1st born turned 3. It should have been a happy fun filled day. But we drove to Nottingham, to the Queen’s Medical Centre for Anya to have a kidney biopsy under general anaesthetic. Anup (Meghraj) went with her. He came out dazed and in tears.

6th Dec 2017, Dr Christian a specialist paediatric consultant asked Anya’s nurse Gemma to take her and the baby while he spoke to us. He told us Anya had an extremely rare autoimmune disorder called Goodpastures Syndrome. The disease occurs when the body's immune system mistakenly produces antibodies against collagen in the lungs and kidneys. Collagen is a protein that helps form connective tissue. In Anya’s case, 60% of her kidneys’ filtering system was inflamed, yet her kidney function was surprisingly fine. He told us that in the last 10, maybe 15 years, only 3 children had been diagnosed with this. One needed dialysis, one made a complete recovery and the other didn’t. This condition is more common in white men aged between 15 and 35, that to a chance of 1 in a million, So the chance of this illness in children is even rarer. It is believed to be triggered by something as simple as a viral respiratory infection or breathing hydrocarbons. He told us she would be taken into theatre the next morning to have a central line put in to start aggressive treatment. In all honesty, I stopped listening when we were told that luckily this hadn’t affected her lungs or if we had arrived a week later, the conversation would have been a different one. Luckily we made it just in time so hopefully treatment would work. I wanted the world to open up and swallow me whole. I started thinking “where will I find a kidney, if she needs it?” The Asian community is not known for organ donation. Anup and I walked out of the ward in opposite directions, not knowing what to say. He called his mum in tears, I called my mama (uncle, mother’s brother). Unable to speak, we both somehow told our loved ones, one after the other, that our baby girl was sick, and her future was unknown.

The next day she went into theatre. For the next two weeks she was put on plasamapheresis, similar to dialysis, but separated her blood into different components and discarded her antibodies. It made her weak, pale and scared. She was also given a very high dosage of steroids to suppress her immune system. It made her very hungry, put on weight, and turned her into an insomniac. Her moods were horrific. After two weeks of this, she also started an 8-week course of a drug used for chemotherapy, Cyclophoshamide. We were discharged with a tonne of drugs to keep suppressing her immune system. The next 8 weeks consisted of weekly blood tests to ensure the medication wasn’t altering her white blood count. Due to being on Cyclophoshamide Anya was not allowed to attend nursery, or to be in big crowds, to go shopping, to play in a park. We were housebound. Anya, Armaan and I.

During our time at QMC the nurses on the ward (especially Gemma,), the doctors (Dr Lunn especially, Dr Christian, Dr Kim), the play specialist (Claire), the heath care assistant (Gretchen) went beyond the call of duty. Dr Lunn who looked after us majority of the time worked a minimum 12-hour shift for more than 7 days at a time. He too had children of his own waiting for him. We stopped him in the corridor on numerous occasions and asked as many questions as we needed; he always had time. The nurses would take Armaan off us so we could take care of Anya. They hugged us and wiped my tears when the days were tough. As clichéd as it sounds we are so lucky to have our NHS. Post Hospital stay Anya’s Specialist in Cambridge Dr Birgit gave me her bleep number. She has always answered my calls or returned them that day. She would always call me to give me blood test results the day they came out. To me this level of care would not even happen in private hospitals. Dr Birgit Anya’s guardian angel. Without her we don’t know where Anya would be right now. Thank you all at ward E17 for the unforgettable love and care.

During our time there, we saw babies in need of kidneys, young children being schooled in hospital while being on dialysis as they needed to be there most of the week. Words cannot describe the pain parents of sick children go through. My poor boy was forced to stop breastfeeding as he stayed in a hotel with his father, and I had no time for him. However, we are thankful to our friends and family who took the time to come and visit us. To bring us food. To call us every day to check on her. We are grateful to Anup’s employers for being so considerate. She was showered in presents by his work, by our family, my friends (you know who you are), and the generous strangers wanting the children’s hospital to be as magical as possible during Christmas.

So today, I ask as Anya’s 4th Birthday approaches, instead of buying her a present please donate to this charity. They work so hard in saving children’s lives, to make them and their families smile. The money will help with research and care. It doesn’t have to be much, even a few pounds. Lastly, if you’re not a donor, please register. I pray your loved ones never need it but having to face this as a reality, it is scary how many people are not donors. Our organs, will be of no use to us once we have departed this life, but will give life to someone here. Anya is a lot better now, but the road to a full recover is long. We are optimistic that eventually all will be OK. We are proud of our little girl the way she has shown resilience and bravery.

Thank you all for reading. Have a wonderful Christmas, may you and your families stay forever healthy.

Preeti and Anup.

xxx