A Wish for Megan Helping a 4-year-old Girl to Overcome the Challenges of Spina Bifida

Posted on May 11, 2012

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Megan, right, Her mum and her little sisterMegan's specialist bikeBy Jennifer King

Megan McLaughlin appears to be your average 4 year old girl.  She loves dressing up, looking at animals and playing with her little sister and brother.  The only visible difference between her and any other 4 year old becomes apparent when she moves.

Megan was diagnosed with Spina Bifida when she was still in the womb.  Her mother, Louise McLaughlin and her Father, Robert McLaughlin have cared for Megan throughout her life and provided her with the extra support she has needed.

Spina Bifida takes effect around the 8th week of pregnancy.  It affects the spinal column as it is developing.  The column fails to ‘close’ properly and leaves a section of nerves exposed which then leads to irreversible damage.

The location of the damaged spinal column section determines the severity of the effects.  In Megan’s case, the opening was as low down on her spine as it could be.  Many Spina Bifida sufferers cannot use their legs at all and they are limp.  In Megan’s case, she has limited sensation below her knees and is unable to weight bare.

Things are very difficult for Megan and her family because of her Spina Bifida.  Even things such as growth spurts can weaken the muscles in her legs and set her back weeks or even months with regards to her physio therapy.  People with Spina Bifida suffer from bowel and bladder problems.  Megan has suffered  from bladder and bowel paralysis since she was first born.  She was not able to empty her own bladder and for the first 14 months of her life she suffered with terrible infections.  She was often very ill and was in and out of hospital.  This put her at risk of kidney faliure.

In June 2010 Megan had a Vesicostomy at Great Ormand Street Hospital in an attempt to reduce this risk and she has been fit and healthy from that day.  It was at this point her parents were able to focus more on her mobility and development.

At 4 years old now, Megan still uses a wheelchair and specialist equipment such as braces, walking frames and even a specialist bike in order for her to get around.  Even so, Megan has gone from strength to strength throughout her short life, and has amazed professionals who said the she would never control her legs and would struggle to sit upright.

Louise, (30) set up A Wish for Megan which is an organisation set up to help their family to pay for equipment that is essential for her to one day walk on her own.  The funding that they have raised so far have bought Megan a wheelchair better suited to her needs, a specialised bike so that she can go on bike rides with her family, and Knee-Ankle-Foot Orthosis braces which help to support Megan below the knee and help her to walk by herself.

A Wish for Megan does not qualify for charity status as it tenders to the needs of an individual.  Louise said, “This makes our efforts even harder with companies unwilling to help.  However, we will continue to work hard and achieve our aims.”

Louise went on to speak of her experience with the NHS, “I have had to fight tooth and nail for everything.  People (doctors) talk the talk but when it actually comes to doing something they are very different.” The McLaughlin family have been faced with, for the past four years, doctors and nurses telling them that there is not enough equipment available through them because of a lack of funding.  This has meant that Megan has had to go without the equipment that will give her a better quality of life, which is why Louise set up A Wish for Megan.

As Megan grows out of her equipment, her family plan on donating any equipment that she can no longer use to children who would really benefit from it.From left to right, Ethan, Louise, Imogen, Megan

In September 2011 the McLaughlin family were lucky enough to witness Megan take her first 3 unaided steps. “I was sooooo proud of her!  Megan is a cheeky little girl, but has never let her disability get in her way.  She is a fantastic older sister.”

“Our organisation aims to provide for Megan’s future without the need for her to compromise on her physical needs.  As yet, we don’t know any families in the same position or young sufferers of Spina Bifida. We would love to hear from anyone in a similar situation.”

The McLaughlin family are aiming to provide Megan with enough care to enable her to play with children her own age without any prejudice.  Megan’s positive ‘can do’ attitude has helped her to defy doctors and learn to walk with the aid of walkers and leg supports.

Megan’s legs grow stronger every day through the use of physiotherapy and the aids that A Wish for Megan has helped to fund.  Her family hope that this time next year, Megan will be walking unaided.

Dr Sheila Shribman, who has not dealt with the McLaughlin family specifically, National Clinical Director for Children, Young People and Maternity Services said, “If I was the parent of a child who had an illness or disability or indeed any kind of health problem I’d want to have time with my doctor for them to listen to me and to understand my concerns.”

“When a child and family come to the outpatient clinic they may need no tests at all.  Perhaps its just about listening and talking and then the problem can be sorted out without any tests.  In order to ensure we provide excellent services for children and families we really need to make sure that we take their needs and opinions and views into account and we put them at the centre of everything that we do.”

Megan's specialist walking frame and KAFO leg braces

There are forums online for parents who have children with Spina Bifida to get in touch with each other and discuss the help available to them as well as helping each other.  There is also a lot of information available through the NHS to help parents know what to expect as well as providing information on the prevention and treatment of Spina Bifida.

You can contact the McLaughlin family about A Wish for Megan at awishformegan@yahoo.com

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