When little Megan chuckled for the first time, it was the most special moment ever for her parents Anna and Neil, who found it profoundly moving.
For three-year-old Megan, from Belfast, is severely disabled and, after being born with hydrocephalus and a serious heart condition, she was not expected to live. But Megan is a little fighter, and is currently preparing for open heart surgery.
She has already undergone several operations, and will need them throughout her life as she grows to insert different drainage shunts.
Her condition means she is totally dependent on her carers for all her needs – she has little or no movement in her limbs and has limited vision and hearing. But when stimulated, says mum Anna, Megan will respond by wriggling about and making ‘happy’ or ‘sad’ noises.
“So it was absolutely amazing when we heard her chuckle for the first time a couple of weeks ago when she touched a wind chime,” she added.
Newlife Foundation are hoping to give little Megan something more to chuckle about by funding a fluorescent sensory bubble tube which will help stimulate and entertain her, and a visual monitor to ensure her safety.
Newlife Foundation, the charity for disabled and terminally ill children, is trying to raise just £1,391 to give Megan a better standard of life – not a lot to ask to give a little girl a chance to develop her senses of vision, hearing and touch.
Newlife Lead Nurse Karen Dobson explained: “Play is important to all children, but for those with a disability the opportunity to access a variety of interesting and varied aids may not be a reality due to the fact that some items can cost hundreds of pounds each. The use of sensory equipment encourages children to get more control over their bodies and their environment and can be a fun way for families to interact.”
Right across Northern Ireland, disabled and terminally ill children are suffering as a result of the recession and welfare cuts, but families are being assured there are still resources available to them.
Newlife Foundation for disabled and terminally ill children is currently experiencing hugely increased demands on its resources; calls to the Newlife Nurse Helpline – 0800 902 0095 –have shot up and there are thousands more hits on the charity’s website https://newlifecharity.co.uk
“Because of the huge demand,” said Newlife CEO Sheila Brown, OBE, “we are calling on ‘local heroes’ to help us raise money to fund Megan’s specialist equipment. Newlife guarantees 100 per cent of all monies received will go directly to fund the equipment, and any surplus funds will be ring-fenced to support other children in Northern Ireland.”
In the current financial year alone, over £56,711 has been spent helping 37 children in Northern Ireland, and eight more children are currently waiting for specialist equipment to the at a cost of over £15,932. Newlife has invested £248,792 in equipment grants for 204 children in Northern Ireland since its equipment grants scheme began.
If you think you can help, the Newlife Community Fundraising Team can be contacted on freephone 0800 988 4640. Any individual or organisation thinking of running a fundraising event is asked to contact the team, who can offer support and guidance.