Un­cer­tain fu­ture ahead

Auckland City Harbour News - - FRONT PAGE - By JESS LEE

LIT­TLE Lily-Grace is one in 100 mil­lion.

The 10-month-old has tri­somy 9 mo­saicism (T9M), an ex­tremely rare ge­netic prob­lem caused by an ex­tra chro­mo­some in some of the body’s cells.

The con­di­tion brings with it a raft of de­vel­op­men­tal is­sues that can vary dramatically from case to case.

Some chil­dren with T9M will never walk or talk; some are blind, deaf or un­able to feed with­out a tube.

The fu­ture is un­cer­tain for Lily-Grace and her par­ents Amanda and Warner Davies, but they hope their lit­tle girl proves wrong.

There are be­lieved to be less than 150 cases of the con­di­tion world­wide, with only four chil­dren di­ag­nosed in New Zealand.

The Mt Welling­ton cou­ple is strug­gling with the fi­nan­cial im­pli­ca­tions of car­ing for a baby with the con­di­tion and are con­cerned about the fu­ture.

‘‘I love Lily com­pletely, I love her fiercely,’’ Amanda says.

‘‘Would I change any­thing about her? You bet I would.

‘‘I would take away this rare dis­ease that threat­ens to rob her of a nor­mal fu­ture.

‘‘But I would never want to

the

pro­fes­sion­als be with­out her – I would rather have her just how she is, any way she turns out to be, than not have her at all.’’

The Davies’ are shar­ing their story as part of T9M aware­ness month.

Lily-Grace had a rough start to life. She was born pre­ma­turely, weigh­ing just 1.7 kilo­grams (3lb 7oz).

She had to be tube-fed and strug­gled for breath.

Her first few months were spent on oxy­gen and her mum’s de­ter­mi­na­tion not to rely on tube-feed­ing meant bot­tle-feed­ing 18 times daily.

It was an ex­haust­ing rou­tine but it means Lily-Grace has reached a nor­mal weight.

The T9M di­ag­no­sis was a big blow to the fam­ily but the un­cer­tainty sur­round­ing her con­di­tion is the hard­est part.

‘‘I feel like we went through this emo­tional tsunami that we couldn’t get up from be­cause we were told there was an­other is­sue, and they said she might have this and it might be that,’’ Amanda says.

‘‘It’s a hor­ri­ble thing not to know what the fu­ture holds.’’

Early in­ter­ven­tion in the first two years is cru­cial for Lily-Grace to reach her devel­op­ment po­ten­tial, she says.

But the cou­ple is un­able to take her to regular edu- cational baby groups be­cause of her low im­mu­nity.

This leaves the Davies’ re­stricted to tak­ing their daugh­ter to spe­cial­ist classes or pri­vate ses­sions at home.

‘‘The hos­pi­tal ser­vices and gov­ern­ment care have been ex­cel­lent and I’m ex­tremely grate­ful.

‘‘But they have wait­ing lists and more pa­tients than re­sources – there is just not enough to go around,’’ Amanda says.

The fi­nan­cial costs, such as in­stalling air-con­di­tion­ing to help Lily-Grace reg­u­late her body tem­per­a­ture, were not what the pair bar­gained for when Amanda was preg­nant.

The con­di­tion was picked up on any scans.

‘‘You want a happy end­ing, so all the dreams that we had have had to be read­justed,’’ Warner says.

‘‘It’s very hard chang­ing your mind­set from wor­ry­ing about the fu­ture to just en­joy­ing the day.’’

The cou­ple hopes to set up a trust next year to help fund ther­apy and spe­cial­ist equip­ment for New Zealand chil­dren af­fected by the con­di­tion.

They are fundrais­ing to help Lily-Grace get the best start she can and to reach her po­ten­tial.

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Photo: JESS LEE

Un­con­di­tional love: Amanda Davies with her 10-month-old daugh­ter Lily­Grace who suf­fers from the ex­tremely rare ge­netic con­di­tion tri­somy 9 mo­saicism (T9M).

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