Poppy and Jacks fundraising walk for the Nephrotic Syndrome Trust

Poppy and Jacks are doing 15km in a week to raise money for The Nephrotic Syndrome Trust. All ages in the nursery are going to be getting involved with the staff and hopefully our parents too. We have 9 different sites and everyone is going to get involved to help raise money and awareness for this charity who are currently doing research in Bristol to find a cure for this condition.

In July 2020 a little girl at Poppy and Jacks nursery in Poulton became poorly with a kidney condition called Nephrotic Syndrome, at just 18 months old. Darcey has been at Poppy and Jacks full time since being a tiny 6 month old baby and is such a bundle of joy, giggles and cuddles. This is her story told by her mummy:
In July 2020, at 18 months old, our daughter Darcey (who had had a perfect birth and no other medical conditions) suddenly woke with puffy eye lids. This went on for 3 days and over the course of each day, the swelling would reduce before returning in the same way the next morning. On the fourth day, I phoned the GP asking for an allergy test as we could not determine what it could be in Darcey's bedroom which were making her eyes swell. The GP immediately phoned the hospital and explained that they needed a urine sample to rule out 'something really rare which highlights a kidney problem'. I didnt think anything of it but the GP asked to see us that day; they prescribed medication for an infection and hayfever whilst they were awaiting the urine sample. Overnight, I googled 'puffy eyes kidney' and saw Darcey in every single google image- I was convinced at this stage that she had a problem with her kidneys and took her to the GP surgery at 8.30am. The GP checked her urine and phoned us immediately asking us to take Darcey immediately up to hospital. On arrival, a further urine sample was taken alongside blood tests. A Consultant Paediatrician came to see me and explained that Darcey was very unwell and had Nephrotic Syndrome which is a chronic condition meaning that her kidneys had leaked large amounts of protein to her wee (her protein levels in her urine were 4045 at the time, there shouldn't be any protein!) Her bloods showed severe dehydration and there she was giggling and running around the ward like the little warrior she is! We stayed on the ward for 6 days with daily blood tests and urine samples. Darcey was put straight onto immunosuppression steroid medication at the highest dose; at 18 months old, Darcey was taking 7 steroid tablets a day. The side effects of steroids can be devastating with weight gain, mood swings, stomach irritation and insomnia being the main side effects that Darcey can experience. Everyday Darcey's body was retaining more and more fluids; she was ballooning by the day and was put on a strict 700ml fluid restriction, low salt diet and every nappy had to be weighed. We had to calculate what went into her was coming out prior to her being allowed any further fluids. To our delight, Darcey reacted to the steroid medication meaning that she has steroid sensitive nephrotic syndrome (SSNS) and is more than likely causes by Minimal Change Disease. The Doctors believe that a cold (a simple cough and cold!) caused her body to fight her kidneys and cause this condition. There is no cure now that Darcey has the condition and she has to have daily urine checks to monitor the protein levels in her urine. In September, Darcey was weaned off steroids for the first time, however sadly it was only 2 weeks before Darcey relapsed again and needed to go back on the highest dose of steroids. This is very common with NS and many children have multiple relapses, require second line medication or become steroid dependent. We don't know yet what category Darcey is in but we are trying again to wean her off the steroids, hoping she wont relapse again!