Charity event in honour of Ben this Sunday

He is now eight-years-old and relies on the care of the Northern Ireland Children’s Hospice, a charity being forced to scale back their services because of declining donations.

His mother Lesley, from Eglinton, has been “busy, busy all the time” trying to raise money for the hospice who have helped her son so much over the years. A male waxing charity event will be held this Sunday (September 9) at the Waterfoot Hotel in Londonderry at 7.30pm to raise money for the Northern Ireland’s Children’s Hopsice. Lesley said that all those coming along will be helping a worthwhile charity and having a “bit of craic” at the same time.

Speaking about Ben’s illness, she explained that he faces severe breathing difficulties caused by the problems with his airways, and has required a device known as a tracheostomy since he was nine-weeks-old to allow him to breathe at all. The trachesostomy is an artificial airway, which is an opening on the outside of the neck in to the trachea inside the neck.

Northern Ireland Children’s Hospice provide care for Ben and, in doing so, some respite for the Kennedy family.

The young mother explained, however, that the level of funding for the Hospice has been declining in recent years because of the economic downturn, and that she has already begun to notice the difference in the services being offered.

She said: “They get a minimal amount of funding from the government but they are reliant on charitable donations. They need £2.4 million every year, and they do get that most years.

“The recession has been quite tough on them and they have to make cut backs. We would have got ‘hospice at home’, where they come to your house to help out, but we haven’t had any of that in the last three or four months. It is not their fault. That’s the way things are and they have to prioritise.”

Lesley added: “The Hospice needs £2.4 million per year to support 250 children in Northern Ireland with life threatening or life limited terminal illness. 50 of those families are from the Derry/Londonderry area.”

She explained why Ben requires such care from the Hospice: “The tracheostomy is Ben’s only airway, as he has a condition called ‘Bilateral Vocal Cord Paralysis’ whereby his vocal cords have became paralysed, not allowing air to pass through from his nose or mouth.

“Ben also has a ‘Glottic Stenosis’, which is a severe narrowing in the airway. He needs 24 supervision to ensure that the trachesotomy remains clear and free from obstruction as this would be life threatening to Ben should it become blocked. He requires suction of the tube both day and night to ensure this.

“He travels back and forth to Manchester Childrens hospital were he has had a few surgical operations to try and become trachy free, none of which have worked at present.

“We do hope that some day in the near future Ben’s operation will be a success and he will be tracheostomy free and able to enjoy life as a normal little boy.

“His life is very restricted. A lot of activities he cannot go to; the beach because of the sand getting into the trachy and into his lungs; he cannot go to the swimming pool; he cannot go to his friends house; he cannot leave home alone and without a suction unit and portable oxygen cylinder and emergency bag.”

She has organised a ‘male waxing’ event at the Waterfoot Hotel on Sunday, September 9 to try and raise some money for the charity which is so close to her heart. Speaking a few weeks ago, she said: “I am trying to get together some victims, sorry I mean participants, to take part in a Male Waxing and Shaving Event to raise vital funds for the Northern Ireland Children’s Hospice.

“Participants will be able to enter via a sponsorship form raising as much as you can, in return for the pain free males to have a part (or all) of their body waxed or have their head shaved - all in the name of a children’s charity. Sure its not much to ask!”

For those interested in taking part or raising money for the event, contact Lesley Kennedy on 07960899806.