Neve T's quilt    (Quilt Completed)

Thank you

Neve received her quilt today, thank you to all the stitchers who took the time to make the wonderful squares. You have all put a smile on Neve's face she's had a bit of a rough week and this cheered her up.

Finished photos

Individual squares

Card

Stitched by: Kaz Bowen

Biography

Neve was born 6 weeks early. She spent 2 weeks in SCBU. When she was allowed home everything was as normal as it could be until Neve was 5 years old. In January of 2021 I noticed her eyes and cheeks would puff up like she had an allergic reaction to something. I took her to the GP who prescribed a short course of steroids and it cleared up. In May the swelling came back but it was her entire body, they tested her urine and found high levels of protein which is an indicator that her kidneys weren't functioning properly. We were referred to RVI where they diagnosed nephrotic syndrome.

The treatment is a high dose of steroids as well as omeprazole to stop the steroids ruining her stomach lining. Her diet had to change, she wasn't allowed any salt in her diet and her fluids were restricted because of the oedema. Her urine has to be tested every morning and the result recorded. Neve gained 3 stone in weight because of the high dose of steroids, she was constantly hungry and emotional outbursts were every day. My happy little girl changed quickly because of the medication but she needed it to make her better. The steroids worked at first and got her condition under control but Neve couldn't come off them without relapsing.

By September 2021 Neve was diagnosed with steroid dependent nephrotic syndrome and a 2nd line of medication was advised. Neve had a dose of cyclophosphamide in December 2021 which is when it was discovered she had steroid induced diabetes which is rare. We learned how to do insulin injections, change her sensor and more diet restrictions. Her medical team decided to try rituximab which would be better to help her reduce the steroids and stop the insulin injections.

The rituximab suppresses her immune system and stops the production of b cells for 6-12 months. Neve has to take an antibiotic every day to stop infections and has to be careful with viral infections. She needs her bloods taking every 3 months to check her b cell levels.

Neve got 8 months relapse free before her b cells started coming back. In September 2022 she got her 2nd dose of rituximab. Neve still takes 5mg of steroid every other day. During the 1st year since being diagnosed she has been hospitalised with 2 different infections that needed IV antibiotics.

Neve was also diagnosed with childhood migraines. She didn't get any warning signs of a migraine she would say her head hurt and then vomit and fall asleep. Now she has warning signs and can't stand light or noise and can't eat or drink anything without vomiting. The medication is working and her migraines have gone from 2 a week to maybe 1 or 2 a month.

Through everything that has happened Neve still smiles and doesn't let it stop her doing things.