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Fundraising day in Folkestone for Rhys Hills, Poppy Rayment and other children with chromosome disorders

00:00, 17 July 2015

updated: 15:55, 17 July 2015

The parents of a child with breathing difficulties are holding a fun day to help others with similar conditions.

Little Rhys Hills, 19 months, has also needed eyelid surgery, all because of a rare chromosome disorder.

Now his dad, Rob Hills, of Ethelbert Road, Folkestone, is organising a fun day next month for people similarly affected, including another child from the town – five-year-old Poppy Rayment.

Rhys Hills and his dad Robert Hills.
Rhys Hills and his dad Robert Hills.

Mr Hills explained: “Even before Rhys was born he was on an incredible journey.

“We found something was not quite right on the first scan during the pregnancy, but after numerous testing we didn’t get a diagnosis until just after his first birthday.

“Since his diagnosis, he has spent a considerable amount of time both at the Evelina Children’s Hospital and Great Ormond Street Hospital in London.

“Although life has not been easy for Rhys so far, he is a very happy child and always with a smile on his face.”

The charity fun day is at the Three Hills Sports Park at Cheriton Road, Folkestone, from 10am to 4pm on Sunday August 23. It will include an under-14s football tournament, children’s fun activities, handmade arts and craft stalls, reptile handling and tarot and crystal reading.

The money is being raised for Unique, a small charity providing help and information to families who have children with rare chromosome disorders.

Rhys Hill who has a rare chromosome disorder.
Rhys Hill who has a rare chromosome disorder.

Rhys has respiratory problems due to the combined conditions of laryngomalacia (floppy larynx), tracheobronchomalacia (flaccid cartilage support of the trachea) and subglottis stenosis (narrowing of the airways).

He has also had surgery on his eylids so that he can see better, which will have to be done a couple more times to complete the treatment.

Doctors are hoping that Rhys will eventually grow out of his condition, otherwise he might need major surgery.

Mr Hills, 30, works for the subscriptions department of Saga magazine in Folkestone. Rhys’s mum is Caroline Hills, 26, and he has two brothers, Kaiden, six, and Lucas, four.

Apart from attending the event, you can help by donating to Mr Hills’ JustGiving page at www.justgiving.com/robert-hills1.

Poppy Rayment has an extra chromosome, which is thought to be a contributing factor to her Downs syndrome.
Poppy Rayment has an extra chromosome, which is thought to be a contributing factor to her Downs syndrome.

Poppy Rayment’s condition is a result of her having an extra chromosome.

She was found to have a hole in her heart when her mother was 28 weeks pregnant.

She had surgery at the age of 11 months to repair her heart. Her condition is called atrioventricular septal defect (AVSD), and her treatment took place at the Evelina London Children’s Hospital.

Poppy is described as a happy, loving child, but she has Down’s syndrome, is unable to walk unaided, and her food intake is limited. Her diet is still predominantly made up of bottled milk.

The five-year-old, of Brabner Close, Folkestone, is under the care of several professionals, including physiotherapists, speech and language experts, dieticians and paediatricians.

Last March Deal Town Football Club held a charity match for Poppy, Rhys Hills and others with chromosome disorders.

Rare chromosome disorders are caused by genetic material being missing, added or rearranged.

The health charity Unique has a telephone helpline for parents. It also puts them in touch with other affected families to provide mutual support.

It helps almost 12,500 families, with more than 1,500 families joining in the past year.

But, as no other charity does the same work, it is under pressure and needs more support and volunteers.

For more information about Unique, email info@rarechromo.org or call 01883 723356.

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