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.

Born 29th March 1991 - Died 26th November 1996

This is my presentation to the Royal Commission on Genetic Modification appearing as a parent witness, in December 2000, hoping that genetic modification will continue and hopefully find cures or treatment for rare genetic diseases such as Batten Disease that Michelle died of.

I’m Sharon K.  Mine is not a typical story.  My family’s experience has been more extreme than most, with not one, but TWO unrelated genetic/chromosomal afflictions in one small child.

 Michelle just after she was born
Michelle was born at home, the homebirth I planned and dreamed of but she was not the baby I dreamed of.  When I saw her face, I thought, “She looks like she has Down Syndrome...no......that doesn’t happen to me!  It only happens to other people.”

When a paediatrician came to our home to confirm it. The reality hit me.  I was in shock.


SHOCK because I’d always feared having a child with a  disability.....
GUILT because I thought that I’d caused it to happen....maybe I was too old....or that I was defective in some way......
HELPLESSNESS because there was nothing I could do about it.  It was out of my control.

We had to transfer to hospital because Michelle was having difficulty feeding, and the next day, I was told that Michelle had a major AV Canal Heart defect and might go into heart failure in the next few days.  I was devastated that I might lose my baby. 

She survived the next few days, and many more to come.  I spent 7 weeks establishing breastfeeding with her and her health was very good considering her heart defect and weak immune system. 

At nine months she had a catheterisation test to do with her heart defect and we were horrified to be told:

“We recommend that you operate but bear in mind, people with Down Syndrome don’t mind when they die of heart failure!”   Needless to day, Michelle was put on a waiting list for major heart surgery.

Happy 1st Birthday Michelle!
Michelle's first birthday
By age one, Michelle was a happy, bright, responsive, healthy-looking baby, full of mischief and giggles and we all loved her dearly..........

At the age of 15 months, she got viral bronchial pneumonia, and after that her health declined.  She was on antibiotics constantly and I couldn’t take her outside the back door for longer than 5 minutes without her developing a cough, from breathing in cold air.  I was virtually house bound with her and found it very difficult taking my older daughter to and from school and to other activities....My older daughter found it very difficult, too.


Michelle had major heart surgery at age 2 years, 4 months.  This was done virtually at the last minute for her as pulmonary hypertension was starting to set in. That was the greatest ordeal we had ever faced.  As we left the hospital after only 8 days, we were told: 

“We didn’t think we’d be seeing you go home so soon, we thought we’d left it a bit late”  That took the wind out of my sails.

Michelle in intensive care after major heart surgery 29 July 1993
Michelle just had heart surgery at age 2
Michelle and Chris at the zoo, Nov 1995
Michelle doing well, the hurdle is over...
or is it?
After heart surgery, Michelle went ahead in leaps and bounds.  Her health improved dramatically, she learnt to walk, sign about 30 signs and even say a few words.  She could climb, turn pages of books, and play with her sister, who adored her.  She loved music, would “play” the keyboard and “sing” along with me as I played the piano to her daily.


About 11 months after heart surgery she had 3 epileptic fits, a month apart.  We assumed that it was a result of heart surgery and wasn’t anything too major to deal with compared to what we had been through so far.

So we went ahead and conceived our third child.

As soon as I became pregnant, Michelle started having seizures daily and I thought it was because she was upset at her father being away in Perth, as his Dad was dying.  They got worse until she had a fifteen minute fit and ended up in hospital.  We then started on the epilepsy medication bandwagon, and found that she had adverse drug reactions and her fits increased.  It was like experimenting on her.

When 10 weeks pregnant, I had a Chorionic Villi Sampling test which showed a defect of the 5th chromosome.  This caused me to have an amniocentesis while on holiday in Australia. This was very stressful.  The results turned out “normal” and I was very relieved.

When I was 33 weeks pregnant, Michelle had 36 fits in one day and I was assessed for premature labour.  Every time she had a fit, I had a contraction.  It was a living nightmare.

Andrea holding Rachael, 13th June 1995, and Michelle

The baby arrived, Michelle didn't appear to know she was there

The baby was born safely at home, and I feared that she also had Down Syndrome as her features looked similar.  A paediatrician came to the home to “reassure” me.  He told me that she had a small head circumference and that she could have a small brain.  I was told to have her checked in 6 weeks time, so I was full of anxiety.  I got the flu and never made it to that check.  I can barely remember baby’s first 11 months, as although she was breastfed and always with me, it feels like I cared for her “on automatic“, my attention always on Michelle’s fits, health and deterioration of her skills, as well as trying to balance the needs of my eldest daughter.  I feel like both of my other two children missed out, although I did the best that I could. 
Michelle turned 5 and was having difficulty sitting up, was often spaced out and unaware, she could no longer walk or crawl, her hands shook, her body had a constant tremour, she couldn’t feed herself anymore, and often choked when drinking.  Her vision appeared to be deteriorating and her seizures could not be controlled easily by medication.  She wanted to stand up and would sit crying out in anguish when she couldn’t. She couldn’t go to the local school, but she started at the Carlson School for Cerebral Palsy, in the hope of regaining her lost skills.

After 19mths of uncontrolled seizures and developmental regression, we saw a neurologist who wanted to out rule a rare genetic disease, Batten Disease.  Michelle had had a brain scan, an ECG (electrocardiogram), and worn a halter monitor to make sure her heart wasn’t causing her seizures.  Next she had an ERG (electroretinography). That showed that she probably had Batten Disease.  She then had a rectal biopsy which confirmed the devastating news that yes.....Michelle had Late Infantile Batten Disease.

SHOCK Because of the harsh reality that our child was going to die
DOUBLE SHOCK Rachael aged 11 mths, had a one in four chance of  having Batten disease too!!
GUILT because I thought that I’d caused it to happen....I had a recessive gene -  I was defective in some way.....I felt responsible....
HELPLESSNESS because there was NOTHING anyone could do about it - there was NO KNOWN CURE

The next day, my head felt like it was going to explode and I felt like I couldn’t take watching my child die.  This was the last straw.  I phoned the Crisis Centre and was asked for my phone number.  I opened my mouth to speak and nothing came out...(for the first time in my life!) My husband took the phone and told them the number and from then on, I went to counselling to help me to deal with such an enormous challenge.

I put my worries about my third daughter on hold in a separate file.  I had to prioritise my “freak outs” and share how much attention I could pay to each one at any given time, for self-preservation.

Over the next six months, Michelle continued to deteriorate.  She turned back into a helpless baby.  She was losing her ability to swallow.  I did everything I could for her, there is nothing I can think of that I didn’t try.  I was determined to find a miracle for her, but who was I trying to kid?  Finally, all I could do was love that little child and hold her.......

.......and I did

.......and I said......“Go to the Angels”

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.


and she did......as soon as I said that....Michelle just died in my arms.................
Six months after diagnosis, Michelle has just died in my arms
Go to the Angels, our little one  - Michelle has just died
It is not over yet...we have the worry about our third child
Michelle in her casket with Rachael looking on
It is not over yet......we have the worry of our third child.......................

.........and our grandchildren..........and our great-grandchildren.......


NB:  This story was done for purposes of the presentation supporting genetic research. Now the 3rd baby is 7, it seems that she is OK and not affected by Batten Disease, although I still feel uneasy if I see any "absences"  like she used to have, or she appears to be slower than the "norm" in any area.  It is normal to be anxious..a sort of defence mechanism after the trauma we have been through.

| Home | Michelle's Story | Poetry Index | Links | What's New | Mobility & Bath Aid | Photos | Joy's Poems |
| Grief Message Board |

Click here if you would like to chat with me or leave a message:

If you think that this page could help a friend, please recommend it below:

Click to recommend this page.

Other Related Pages on this site:

Another similar story of Michelle's life with more photos and not so much text

A brief story about when Michelle died....

If you would like to know more, see this page on
Questions and Answers

Poems about when Michelle was dying

| Home | Michelle's Story | Poetry Index | Links | What's New | Mobility & Bath Aid | Photos | Joy's Poems |
| Grief Message Board |