As families engaged in typical Halloween activities, held costume parties, visited haunted house attractions, and watched horror films, Theresa and Ben Cooke of Pottingfield Road in Tilling Green, Rye, decorated their house with all things spooky to raise money for cystinosis. Theresa’s 10-year-old grandson Reece Martin was diagnosed with cystinosis at just 16 months old.
Cystinosis is a disease which affects approximately 2,000 people worldwide, mostly children. It is a metabolic disease in which the amino acid cystine gets into the cells, but has no transporter out. This causes the cells to crystallise and leads to early cell death. Cystinosis slowly destroys the organs in the body including the kidneys, liver, eyes, muscles and the brain.
With such a rare disease affecting such a small population, research money is scarce to non-existent. And yet research on complicated diseases such as cystinosis often lead to advancements in other rare diseases.
Reece’s mum, Jessica Philips, said he has been through a lot for someone so young. He currently has to take medication three times a day, is fed through a tube, has eye drops four times a day and also has to have growth hormone injections daily. He is currently waiting to go on the transplant list for a new kidney. Jessica added that, despite all his treatment, Reece continues to live his life as normally as possible.
His grandmother would like to thank everyone who donated or made cakes for sale and also “to everyone that donated money. This year’s fund-raising effort raised a fantastic £322.95 for the Cystinosis foundation.”
Make sure to look out for the Cookes’ house next year. In the meantime you can learn about cystinosis at the foundation’s website.
Photos: Dan Lake