FAMILY and friends are banding together to raise awareness and cash to help a sixyear- old boy battling a rare condition.
Harry Beardsell, six, suffers from a rare genetic illness, cystinosis, which causes crystals to form in his eyes.
These harmful crystals form in his bloodstream – attacking his kidneys and eyes, causing him to lose vital minerals and electrolytes.
Harry has to wear sunglasses day and night and inside his home to protect his sensitive eyes and takes 13 types of medication a day to fight the illness.
Mum Nicola Watts, 34, of Gifhorn Road, Canvey, said she first noticed something was wrong when Harry was a baby.
She said: “He kept getting colds, but they weren’t normal colds. Doctors said I was just an over-cautious first-time mum and had nothing to worry about.
“He would go completely off his food, have a raging temperature and be really lethargic.
“Doctors would give him antibiotics and he would be fine for two weeks, then get it again and be worse. I thought he had pneumonia. He was drinking a lot of water and vomiting a lot.”
Harry took a turn for the worse on Christmas Day 2008 and was rushed to hospital where a day later he was diagnosed with cystinosis.
Miss Watts said: “When he was diagnosed, it completely floored me. I was distraught and I felt like I was in a bubble.
“My whole world crumbled.
"To hear the words terminal illness about your child and that we have to keep him alive throughmedication, we just didn’t know what was around the corner. I can handle it better now, but at the time I was completely overwhelmed.”
Mum Nicola, a former swimming teacher, is now Harry’s full- time carer, and makes sure Harry leads a normal life and is a student at Leigh Beck Infant School in Canvey.
She said: “His eyesight is fine, but it is the crystals that cause problems. It is like looking through Swarovski crystals when he is in daylight.
“He always has sunglasses on and we medicate his eyes throughout the day to break the crystals down.
“He is a little trooper.”
Now determined to raise awareness of the condition, a fundraising day is being organised at the Admiral Jellicoe pub, on Canvey, on Sunday, September 7, to raise money for Cystinosis Foundation UK.
There will be stalls, music, face painting and inflatables from 11am to 9pm. Entry is free and stallholders must pay £15 for their stand.
If you want to be part of the day call Nicola on 07961338892.