In September 2021, our lovely eldest daughter Oriana was diagnosed with Nephrotic Syndrome, a rare, serious and chronic kidney condition. She very quickly became extremely unwell, after having been misdiagnosed several times by previous doctors. From that day onwards, our lives changed quite dramatically. Oriana was in and out of hospital all the time, with long stays, short stays, regular blood tests, daily urine tests, intermittent infections, constant relapses and an incredible amount of medication. Once Oriana was finally in remission, things then became worse when we realised that the particular form of the disease she had was more complicated- her kidneys were entirely dependent on the harsh medication that put her back in remission to continue to work, and so every time the medication was stopped, she would relapse again. This caused further issues as the medication itself had many nasty side effects, changing her personality and appearance entirely, as well as putting her immune system at a huge risk. We then began a journey of trial and error with different variations of medication, trying our best to find something that would keep Oriana in remission long term. Some of these didn’t work for her, which meant moving on to harsher, more toxic medications. This was such a difficult time for us as a family, but particularly for Oriana who was so young.

So how is Oriana now? Well I am pleased to be able to share that we found a medication that has kept Oriana in remission for just over a year and a half! Oriana never used to be able to get over 6 weeks without relapsing, so this is obviously a huge difference. However, the medication she’s on is a harsh immunosuppressant, which is ordinarily used for patients who’ve had organ transplants. This means that Oriana is not only subject to intermittent infections, but is also severely immunocompromised. She cannot be vaccinated against illnesses like Measles, Rubella etc. and something as common as chicken pox, which she can get multiple times due to the fact her immune system essentially destroys any antibodies she makes, is extremely dangerous to her. Oriana started school in September 2023, and as you can imagine, is subjected to many different illnesses and viruses. I have to be alert all the time, to make sure that I am ready to take phonecalls from the school regarding illnesses going round, so that I can contact the hospital if needs to, to get her on antivirals. Oriana had one hospital stay in January this year, due to catching Type A Inflenza from school, and was extremely unwell. The next step for us comes in April- Oriana will have her routinely hospital check up, where they are planning on trialling taking her off of her medication completely, to see what happens. Of course, in a perfect world, we would love for Oriana to not be on these medications. We would love to not have to wake her up early every morning to mix up and give these drugs to her, and we’d love to know that she’s just as safe/no more at risk of everyday childhood illnesses than any other child. However, this is extremely scary for us! We know generally, the odds are not in our favour, and the thought of her relapsing again and going back to how she was before is quite honestly terrifying.

One huge comfort through all of this was the NeST community, who not only are working extremely hard to find a cure for Oriana’s condition, but also provide massive support for the families of those suffering and affected by this awful disease. They’ve been such a crutch for us in terms of advice and finding fellow and local support, and they are the reason we have access to the medication we do, thanks to their amazing research! You can see the lovely thank you message they put up about the SWR fundraising day last year, on their website below:

https://nstrust.co.uk/news/273/24/Sorcha-and-work-colleagues-fabulous-fundraising-day-at-SWR-Customer-Service-Centre

Nephrotic Syndrome continues to be an illness that even doctors themselves know very little about. Children are constantly being misdiagnosed, due to the lack of awareness. I would be very grateful if you could take the time to watch this video below, which gives you some insight to the disease, and also take a look at the NeST website! They have so much information on there to educate everyone. The below video was created by fellow parents whose children also suffer from NS:

https://www.youtube.com/watch?v=fJreDD9-tOM&authuser=0

Finally, I’d like to finish with the fact that NeST are trying every day to find a cure for Nephrotic Syndrome. There still is no cure, but they work tirelessly every day to find one. What an amazing cause this is! The last 2 years have been such a success for us holding these fundraising days, with us raising £399.00 in 2022, and then a whopping £485 in 2023! It would be great if we could beat that again this year. We will be using this day to have a bake sale and a raffle, to celebrate Oriana's long term remission and to support a charity that's incredibly special to me and Jon.