Belfast Telegraph

Wednesday 27 August 2014

Our Megan chuckled for first time a few weeks ago ... it was amazing for us

Hearing your child laugh for the first time is a memory any parent will cherish, but for one Belfast couple it was even more special than usual.

Their three-year-old daughter Megan suffers from major health problems which have left her severely disabled.

She was born with hydrocephalus – more commonly known as water on the brain – plus a serious heart condition, and was not expected to live.

But little Megan is a fighter and after undergoing several operations – including having the corner of her eyelids sewed to protect her eyes – she is now preparing to undergo open heart surgery.

It means that Megan is totally dependent on her carers for all her various needs – she has little or no movement in her limbs and has limited vision and hearing.

Instead, she will respond by wriggling about and making happy or sad noises.

Her parents, Neil and Anna, said their daughter has brought so much happiness to their lives.

"At the start it was very hard for us," Anna explained.

"Doctors can't give you a black or white answer, there is always a grey bit.

"But every time Megan does something new it makes it all worthwhile, it helps you see past all those things."

An example came a few weeks ago when she chuckled for the first time. "Megan can't talk or react like a normal child, so when she tapped something with her foot and giggled out it was amazing," Anna added.

"Something so small and insignificant to other parents means the world to us.

"It is such a big achievement for Megan."

The toddler will need operations throughout her life to insert different drainage shunts.

Megan's parents have been working with Newlife Foundation, a children's disability charity. The charity is hoping to raise £1,391 to fund a fluorescent sensory bubble tube which will help stimulate and entertain Megan, and a visual monitor to ensure her safety.

Newlife nurse Karen Dobson said it would help Megan to develop her senses of vision, hearing and touch.

"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," she said.

"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."

Newlife chief executive Sheila Brown said the charity is experiencing a huge demand for its resources.

"We are calling on local heroes to help us raise money to fund Megan's specialist equipment," she said.

"Newlife guarantees 100% 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."

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