A Wigan couple has pledged to raise £1,000 for a local charity after their daughter was diagnosed with a rare chromosome disorder.
Evana Parkinson, three, was diagnosed with a condition only known as “15Q11.2 microdeletion”, a name which stands for the chromosome she is missing.
Her parents, Scott and Kayley Parkinson, noticed that something was wrong when Evana, who was born in April 2015, did not start to smile.
They soon realised that she was missing important milestones for a developing child, including being able to stand up.
Scott, a dad-of-three from Spring View, said: “Evana could not bear weight at all so we took her to the GP who referred Evana to the hospital.
“A few months later, we found out by microarray test that Evana has a rare genetic condition, 15q11.2 microdeletion.
“It causes Evana to be very delayed. She was two when she took her first steps. She’s now three and she still cannot roll, run or jump.
“She has hypermobile joints which cause her great pain. Her speech and understanding is also delayed.
“Evana also has absent seizures and is constantly exhausted from working so hard. Even a two minute walk can leave her in bed for hours or screaming in pain.”
The couple, who have two other children, four-year-old Erica and Ellery, 16 months, are hoping to give something back to children’s charity Blessings in disguise who have helped to bring joy into Evana’s life despite her constant struggle.
Scott and Kayley, who own a gaming business shimlarltd.co.uk, hope that a combination of raffles, charity walks, runs and auctions will raise £1,000 for the charity over the course of the next year.
“They have given Evana things she couldn’t have experienced,” he said. “We have decided this year to raise as much money as we can for Blessings in Disguise because of the amazing oppurtunities they have given to us as a family.
“Life with a child with special needs isn’t always easy, especially when there are other children involved.
“But Blessings in Disguise have given us multiple days out which has given our children the best memories and shown Evana that she can have fun with her brother and sister despite her difficulties.”
Inspirational Scott, said that the family has been “overwhelmed” by offers from businesses to donate prizes to their latest raffle.
The raffle, which offers a prize worth more than £1,000, is targeting Wigan’s growing vaping community,
Scott and Kayley will split this particular raffle money between Blessings in Disguise, “Swan UK (syndromes without a name)” and “Unique - rare chromosome disorder suppoer group”, all three of which have offered recent support to the family.
The couple, who volunteer for Wigan Warriors, are hoping to also launch more competitions in the future offering a variety of different themes.
To take part, entrants must donate to one of the three charities and post a link on the competition page.
To find out more visit: www.facebook.com/scottkayleycharityraffles/posts/473972676349946