Warning: at the foot of this page are two  photos of Michelle after she died.  Do not scroll down that far if you may find that difficult to handle.

From birth 29th March 1991 - death 26th November 1996


Introducing Michelle
Born at home, 29th March 1991
Down Syndrome & AV Canal defect
Transferred to hospital because of feeding difficulty

Michelle and Chris at the zoo, Nov 1995



What joy you bring into my world
Tiny baby of the light
I wish that I could be with you
All the day and all the night

All the ups and all the downs
Confuse my mind, exhaust my being
But when I hold you in my arms
All the life comes back to me

What lies in store for us to face
I cannot know or hope to guess
I only know that I love you
And what will be, time will assess

Please stay with me, is what I cry
Don't leave me now that we have met
Already you have brought me much
Oh dear Michelle, please don't go yet.

Copyright Sharon K. 1991

Michelle in hospital with me for 3 weeks, the goal to establish breastfeeding without tubes and bottles (took 7 weeks in total, the hardest thing I'd ever done) 


Chris holding Michelle in hospital April 1991
Happy 1st Birthday Michelle!
Michelle's first birthday, 29th March 1992
Heart surgery, July 1993,  at age 2 years, 4 months, after waiting 19 months on the waiting list, watching her health decline 
Michelle in intensive care after major heart surgery 29 July 1993
Michelle is walking now aged 3
By age 3, Michelle was using about 30 signs in sign language, saying a few words, climbing and walking.
In August 1994, Michelle had 3 seizures of different kinds in a space of 6 weeks.  Assumed because of heart surgery and we could deal with it.  Conceived 3rd child.  During the pregnancy the fits increased dramatically peaking at 36 fits in one day when I was 33 weeks pregnant. Drugs caused fits to worsen or gave her adverse drug reactions.  It seemed like we were experimenting on her.
Chris, Andrea, Sharon, Michelle, Nana - November 1994
Andrea holding Rachael, 13th June 1995, and Michelle
Baby  was born June 13th 1995 at home.  Her big sister adored her.  Michelle didn't appear to know she was there.
Michelle was having myoclonic jerks, drop attacks, absences and tonic clonic seizures 
Falling back suddenly from sitting. Could no longer walk or crawl, but could bottom shuffle
Needed a helmet to protect her head.  Following a CT scan, EEG and ECG saw a neurologist
Ordered an ERG (electroretinography) to be possibly followed by a rectal biopsy to out rule Batten Disease 
Turned 5, couldn't go to the local school with her sister
Accepted into the Carlson School for Cerebral Palsy - to help her regain the skills she had lost.


Michelle watching Rachael - March 1996

May 1996 - found out the devastating news that Michelle had  Late Infantile Batten Disease and that nothing could be done about it.  Also found out that her little sister, then 11 months old, had a one in four chance of having been born with it too and that the age of onset was 2 - 4.  The next day, I phoned the Crisis Centre for help and couldn’t speak enough to give my phone number.

Andrea with Michelle, enjoying her new Wheelie  August 1996
August 1996 - got someone to put wheels on the baby backpack so Michelle could still use her legs to be mobile. She loved it!  She could only go sideways or backwards.  Who cared?  She was having fun! She loved zooming around to Michael Jackson's History album. Physiotherapist had not been able to  find anything suitable.  NZ Woman's Weekly did an article on us.
October 1996.  Had waited 3 months for a bathing aid. Unsuitable when it came as her needs had changed.  She hated being strapped, lying backwards and sitting up she would fall about bashing her head on the bars on the sides.  Made our own "bath" for her with foam blocks for support, rubber mat and strap. She loved it!
Michelle in her new bath - October 1996

This photo is out of date sequence but is to show the contrast of how Michelle was a year before she died

November 1995 - at the zoo  .....

Michelle and Chris at the zoo, Nov 1995

a year later.......

November 1996, Michelle got a fever.  I knew she was going to die

Michelle with Chris November 1996



10 days later.......

Michelle couldn't swallow, was Cheyne-stoking, I'm sure she could still see us

Sharon and Chris with Michelle in her final days, November 1996
A touching farewell, Michelle's last photo alive, held by her Nana
25th November 1996 - Last photo taken of Michelle alive, with her Nana


Warning: at the foot of this page are two  photos of Michelle after she died.  Do not scroll down past here if you may find that difficult to handle.


Michelle has just died in my arms 
26th November 1996 - 3.20am
Go to the Angels, our little one  - Michelle has just died
Michelle in her casket with Rachael looking on

If I had loved her any less, the pain would not be so great.

The pain is meant to be there - it is a measure of my love for Michelle

A Shattered Dream

A child is born
A shattered dream
A mother's hopes
A baby's beam
A mother's hopes
A shattered life
A fading child
Relentless strife
A mother's hope
To find a cure
How much of this
Can she endure?
The fading hopes
The child has died
A mother's dreams
And hopes have lied.

Copyright © Sharon K. 2000


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Another similar story of Michelle's life with fewer photos and more text
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Poems about when Michelle was dying

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