Mike and Jackie Felton with Enya (left) and Meganby refusing to re<strong>co</strong>gnise the professor’s qualifications. (ProfessorGluckman has just been appointed Chief Science Advisor toPrime Minister John Key). The Feltons were on their own, with aseverely brain damaged child.A year later, a se<strong>co</strong>nd daughter, Enya was born. This time, the<strong>co</strong>uple sought specialist care and delivered at Auckland Hospital– by caesarean. “I was crying during the delivery. The doctor askedme what was wrong. I said –it’s because it is so easy. Why didn’tthey do this for my Megan?” says Jackie.Before Megan’s birth, Mike worked as an engineer and Jackiewas a bank officer. The <strong>co</strong>uple had everything to look forward toas they started their family. When they took Megan home, theirlives changed forever. Jackie realised that if Megan <strong>co</strong>ntinuedto be fed through her nose, she would lose all sensation in hermouth. Jackie removed the tube and began a painstaking labourof love – to feed Megan for hours each day, <strong>co</strong>nstantly monitoringto ensure the helpless child received enough nourishment.Authorities who visited gave the impression that Megan wouldbe taken and placed in care if the tube was not replaced, but the<strong>co</strong>uple stuck to their <strong>co</strong>nviction that Megan would improve, withtime and effort.That effort is enormous. Megan’s care is 24/7. Two hours ofsleep a night is the norm. “We sometimes meet in the hall atmidnight,” says Mike. “With so little sleep, it was impossible tokeep my job. I’m a fulltime caregiver, helping Jackie look afterEnya and Megan. After four years, it’s taken its toll. Our healthis bad, but we won’t give up on Megan or give her away. We liveon a sickness benefit, with a disability allowance for Megan.That doesn’t nearly <strong>co</strong>ver our expenses. It <strong>co</strong>sts $300 a week justto meet Megan’s needs. She is at the doctor’s all the time withthroat infections. Jackie takes her to <strong>co</strong>nductive education threetimes a week in Auckland – that <strong>co</strong>sts $150 in fuel and diesel tax.She should go everyday, but we can’t afford it. We are paying amortgage and use the credit card to get basics like food. WINZhas given us emergency allowances for food. I hate asking for helplike that, but we’ve tried all appropriate avenues and we can’t doanymore. Our house is a shell, we’ve sold almost everything. Atrip to Pak n Save is our only family outing. Enya suffers, becauseMegan takes so much of our attention. We have no life at all, but wehave to keep going.”When Megan was 2 ½ the Feltons used all their savings totake Megan to China to receive a mix of traditional and moderntreatments over 1 ½ years. Megan responded well, but with moneyrunning out and Enya needing an urgent eye operation, the familyreturned to New Zealand. “Megan has improved so much withJackie’s perseverance. The intensive rehabilitation in China helped,but we learnt that the out<strong>co</strong>me would have been better if we hadtaken her there between 6 and 18 months of age. She can crawl tothe door and can feed, suck and drink.”When asked what, of all their needs, was the most important,Mike replied. “We want to take Megan to Germany for stem celltreatment while her brain is still developing. Bone marrow wouldbe taken from her hip, sent to England to be purified, then injectedback into her spine. There have been good results for cerebralpalsy with the treatment. We believe those two simple operationsare what is needed to bring her to the next level of improving herquality of life. We will never stop fighting for that.” Mike andJackie are prepared to sell their home to pay for the two week trip toDusseldorf, treatment and ac<strong>co</strong>mmodation – estimated at $25,000.Megan is a beautiful child. As Jackie finishes feeding her, Mikelifts Megan from her chair and lies her on the floor, where she graspsa toy and rolls around. She listens to the music on the TV, dances,jigging on her knees and smiles with pleasure. Enya clamoursfor her parents’ attention, while Mike moves quickly from one tothe other. He never relaxes, driven by anger and frustration at hispowerlessness to protect his wife and daughter that fateful day fouryears ago.Jackie: “I know that my lovely daughter is trapped in there, andwon’t ever stop helping her find her way out.”Footnote1 - Professor Gluckman’s quote was supplied by Dr. Paul Hutchison,MP for Hunua.Editor: Mike and Jackie would like to personally thank Dr PaulHutchison and Barbara Knowles of the Hunua Electorate Office for their<strong>co</strong>nstant support over three years, Stuart Keven who donated a loungesuite and single bed and everyone who is getting behind them. If you wishto help/donate call Mike on 09 238 4839.16 Support your local business www.elocal.<strong>co</strong>.<strong>nz</strong>
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