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