MOLLY'S STORY

Molly Kate Clohessy

31/10/2000 - 31/08/2012

Molly was born in Wodonga Hospital on the 31/10/2000.
Weighing a healthy 7lb 6oz, she was four weeks early, our first girl. She had two older brothers, Tom the 3 1/2 and Lachie 21 months old.

They adored there little sister and doted on her. This never changed and over the years Molly always used it to her advantage.

We were two weeks away from our dream of travelling around Australia. Everything was going to plan, until Molly at 8 1/2 months old had her first witnessed seizure. It went for 1 1/2 hours and was the scariest theing we had ever seen.

The doctors explained to us it was a febrile seizure and common in young children and because she had one, she may have another.
We were concerned it may happen again when we were out in the middle of nowhere, so doctors gave us rectal diazapan, a medication that stops seizures.

So off we go on the adventure of a lifetime eager to show our young family Australia.
After spending three weeks on the road stopping at lovely places, we arrived at Monkey Mia. A very isolated litte place
on the W.A. coast where we spent a great day feeding dolphins.

This is where Molly had her second prolonged seizure. We called for an ambulance, and administered the diazapam as directed, we waited 45 minutes for the ambulance to arrive, then another 40 minutes for us to be taken to tohe closest nurses station.

This day is etched in my memory forever as it was the very first time, of what was to become many times
that I had to give my baby girl mouth to mouth resuscitation, because the diazapam didnt stop her siezure only her breathing.

We arrived in Karratha one week later as Mick had organized 6months work. Then we were to travel again for a few more months.

However, over the next six months Molly continued to have prolonged siezures usually lasting upto 40 minutes. They were always very aggressive Tonic Clonic seizures. (Tonic Clonic) is when the whole body is convulsing, which means all of the brain is being effected. They used to be known as Grand Mal seizures.

The doctors continued to diagnose them as Febrile seizures. If I knew then what I know now, ususally anything more than two seizures mean epilepsy!

After months of seeing Molly go through these terrible seizures and feeling like I wasn't being heard, I demanded more testing be done, and when they finally agreed to this, Molly was 15 months old and finally diagnosed with epilepsy. She was placed on medication and in our naivety we thought, "good, we will get her stable and be on our way". How wrong we were!

Mollys seizures never changed and my husband, Mick was offered a job in the small mining town of Tom Price.
So off headed to Tom Price and hoped that Molly would become better and her seizures be more controlled.

Over the next 2 years Molly suffered 100's of seizures always lasting between 40 minutes up to three hours. During our two years in Tom Price, Molly had 13 rescue flights to Perth with the Royal Flying Docotrs Service for hospitalisation.

Many friends and family were concerned for us and desperatly wanted us to return hometo Melbourne, however we lived six houses away from the local hospital and were there with Molly getting medical treatment and on oxygen withing three minutes.

It was at this time Molly was diagnosed with S.M.E.I, which means Severe Myoclonic Epilepsy of infancy.
she was prescribed numerous amounts of anti-epileptic medications during this time, at one point she was on a combination of six, with still no seizure control. The side of these medications caused severe behavioural problems.

Mollys Neurologist had been in contact with one of Australia's leading epileptologist, Proffessor Ingrid Scheffer for help and at that time she was just starting her research into Dravet Syndrome. We were asked to provide blood samples for DNA testing. Ingrid was researching 100 children around Australia who suffered from uncontrolled epilepsy. This was in 2002 and it took two years for the results to be finalized.
In the last six months of us living in Tom Price. Molly was having three hour prolonged tonic clonic siezures every two weeks. This meant her and I were flown down to Perth with the RFDS. It was during one of these times in Perth that I learnt about the Ketogenic Diet. So after a little research I asked about putting molly on it.

The hospital were not keen about Molly going on this diet, as they had only done it once before in the past ten years and didn't think Molly would be a suitable patient for it.

There is only so much a parent can take seeing their child being resuscitated every couple of weeks, so the last time we were flown out of Tom Price, I quickly packed for a long stay, determined to have Molly put on the diet as nothing else was working for her.

We arrived at the Perth hospital in the early hours of the morning and Molly was in a bad way, ( so was I)! After speaking with her neurologist and making it very clear that we were not going to leave until they put Molly on the diet, she pretty much had no choice but to agree.

Within two days of Molly being in high Ketosis she started saying words like "Mummy" and "Daddy", where as before, she could only say "Ma" and "Da". She had a spark in her eyes that we had not seen since she was a young baby and it was like a light had been switched on in her brain.

She was 3 1/2 years old at this stage and that was when we felt it necessary to return to Melbourne and get the extra he;p that was not available to us in Tom Price, such as speech therapy, pyhsiotherapy and occupational therapy.

Over the next four months her speach improved immensely and her walking improved beyond all doctors expectaions.
But best of all she was Seizure Free!

We were able to start weaning her of her anti-epileptic medications, to the point where she was only on the ketogenic diet and epilim. This gave us the opportunity to finally see our girl's personality without being heavily medicated.

What a personality she had too! She was cheeky, bold, naughty, fiesty, strong, funny and never never gave in.

The Ketogenic diet is not easy on either the parent, but especially not easy on the child. The meals are made up of mostly high fat with very little protein and carbohydrates. This makes the body change the was it metabolizes and burns fat which inturn changes the way the brain metabolizes and can control epilepsy.

Being on the diet and seizure free made her feel good and she knew that if she ate anything other than what I gave her, it would make her, in her words "HAVE A SICKE FIT".

Molly had been on the diet for foru months when we received the news the her DNA testing had come back and was diagnosed with Dravet Syndrome. It was another three months before we were able to have an appointment with Proffessor Scheffer. During those three months Molly continued to be seizure free and was coming along in leaps and bounds. Her behaviour was great and she could communicate with no effort.


We first saw Ingrid when Molly had Just turned four years old and had been on the diet for 6mths.
Ingrid was amazed by Molly when she first met her.
She couldnt belive the girl who she had been reading about for the past two years and suffering the types of seizures that she had, was this resilient, walking, talking little girl in front of her, who she could converse with.

Ingrid then went on to tell me that children with dravet syndrome have a very short life expectancy, are usually nonverbal and very disabled.

I will never forget how insulted I felt. My words to her (in a nice way) were, "well we were told the ketogenic diet would not work and she is walking and talking. Who's to say that she won't prove the medico's wrong again". And yoyu know what, she did for a long time.

This was October 2004, and Molly was just about to turn four years old and start Kinder the following year.

Molly became Ingrids Poster girl for Dravet Syndrome something we were extemely proud of but also a little embarassed about too. As we got to meet more families of children with Dravet Syndrome we realized just how fortunate we were wtih Molly being so able.

Over the following year Molly did start having break through seizures, but to our amazement they only lasted between
15 to 20 mins, sometimes even shorter. By October 2005 we had to reintroduce the medication Topamax, this along with epilim and the Ketogenic diet was a good combination for a while.

I had promised my self I would have Molly on the Ketogenic diet for at least 2years, and as we neared that time her seizures although not longer than 20mins were becoming more frequent.

The decission was made to take her off the diet and introduce a new medication that had become available on a trial basis
this was called Steripentol.

Molly continued to have seizures whilst on this combination of anti-epileptc medication however they never went more than 15mins and were never as bad as they were prior to the Ketogenic diet.

Then Molly had a period of only having four seizure in an 18mth period they lasted only 10 minutes.
During this time Molly started school. She had a full time aide for her medical reasons and her slight developmental
delayment.

Molly was learning and loved reading she had great friends, and just loving school. It was when she was in grade two that her educational delayment really started to become more obvious. This was not a bad thing, to her she was having a great time. She loved it when she had to go to see the principal because she didnt want to do what was expected!!! To her it was like a social event and she was really happy to go and have a chat with Mr Mac and the ladies in the office.!!

When Molly was half way through grade 3 she suffered terrible Tonic Clonic seizure lasting over six hours.
This resulted in Molly being placed into an induced coma. One of the side effects of such a violent seizure for Molly was kidney failure so for seven out of the twelve days she lay on a coma, she was also hooked up to a dialysis machine to do the work that her kidneys could not do.

During those twelve days Molly was given many tests, the main ones were the MRI and the Cat scan. The results of these showed Molly had suffered an acquired brain injury and had severe front temporal lobe damage. The prognosis was not good and the doctors were not sure if Molly would ever be able to walk or talk again, they said her quality of life would be very different.

Although I was hearing what they were saying, I could tnot help feeling that they just didn't know our girl and what she was capable of. I was not being dismissive of the doctors concerns, but i just had such a strong feeling theat she would be okay and once agaon prove them wrong.
I knew Molly and I knew what a determind and inspiring little girl she was.
So as I listened to the doctors, I couldnt help but thinking once more "YOU DONT KNOW OUR MOLL".

By God she did! Three days later when Molly opened those beautiful big blue eyes I knew she was still with us. I could see it in her eyes, that pure will to live and have fun.

Once again she defied doctors and too their amazement took her first steps 3 days after waking from a 12 day coma. This is not and easy thing for anyone after laying in a coma for 12 days, as your muscle tone wastes away
This was one of many times in her life that My chest was almost bursting with Pride and I wanted to Scream " NEVER UNDER ESTIMATE MY GIRL!"

We were now at the beging of a new journey, a journey of rehabilitaion. We were told we will be in hospital for between four and six months, and again Molly showed them. After only two months of living in hospital and having rehabilitation daily, we were allowed to return home to be with her big brothers, just two days before her tenth birthday.

Molly worked so hard to learn to read, write, walk and get stronger over the following twelve months. She went back to her beloved school part time and loved being with all of her friends again.

At the beging of 2012 when Molly started grade 5 it was very clear to us that is was time for her to leave main stream school
and start at Sunbury Macedon Ranges Specialist School. The transition took the term and by the beging of term 2 she was there full time.

It was a great move for Molly as she became a lot more independent and loved getting picked up and brought home on the bus. She loved learning to cook, using money and going on all of the excurssions. She was well liked and made friends easly, even if they were "dumb" sometimes!!!

In the five short months Molly was at her new school she became very popular and was voted to be a school councillor. She did not really know what that meant but was extremely happy about it, and getting her school councilor badge was pretty exciting, which sadly she only got to wear for a few days.

I am so glad I told her how proud I was of her, and she loved hearing me say it, so would regularly ask me "why are you so proud of me Mummy?" My answer was usually always the same. "because you are such a lovely caring person, who likes to help people, you are funny and tough and of course beautiful inside and out."

Molly loved the colour pink, but loved the singer Pink even more. She knew all of Pinks songs, what album they were on and what order they were in. She used to love to dance like Pink and thought it very SEXY!!!

Molly's laugh was infectious and she laughed all the time, she talked all the time too, never shut up really!! thats of course
unless Pink was singing then of course everyone had to be quiet.

She loved steak and garlic butter, garlic butter on its own, the fat off the bacon not the meat, mayonaise by the bucket loads
hommus dip, strasburg, strawberries, but her absolute favorite was roast lamb wtih gravey and baked pumpkin.

On the 23 August 2012 Molly had the happiest day, she had seen her favorite people and was so happy becauswe i was making her favorite roast for tea, (which is odd really because I never usually do a roast in the middle of the week).

Molly thoroughly enjoyed her tea and was happy as ever when she went off to bed that fateful night. Molly had been almost seizure free for two years, when we woke to theat dreadful sound of her fitting and 2am.

Our girl suffered the most horrific seizure I had ever whitnessed and it didnt want too stop.

Molly was once again placed in an induced coma and for seven days she hung on. This time was different to 2010 though. Sadly, I didn't have that same feeling of her being able to come back.

Molly stayed with us for seven more days, and gave us the time to come to terms with the inevitable. We are so grateful for those days with our girl.

She fought hard until the very end but on the 31/Aug/2012. It was time for you to rest forever.
Molly was 8 weeks off turning 12 years old.

This is why we are here today.
To raise funds for research into Dravet Syndrome.
To help find a cure or at the very least to give these brave, tough children a better quality of life.

We were fortunate Molly's quality of life was exceptional for a child with Dravet Syndrome.
There are so many kids that are not that fortunate.

Please! Please! HELP!

Not only to raise funds, but to raise awareness in the community about epilepsy, we need to get rid of the stigma
epilepsy seems to have and talk about it. There is no shame in having seizures, just like there is no shame in having something else, Like diabeties

Molly was My little mate, my baby girl. She was always with me, handing me the pegs at the clothes line, coming shopping with me or just sitting next to me watching the t.v.. I miss her so much and would give anything to have her back with us.

She gave us almost 12 wonderful years and taught, not only us her parents and her family, but hundreds of people who were fortunate enough to know her, how to be happy and live life to the fullest, and that is what we are doing now.

Her words were:- "BE NICE, BE KIND, BE FRIENDLY, BE BRAVE!!"

Thankyou for your time, help and understanding.

Kellie Clohessy:- AKA (Molly's Mum)

Thank you for listening

Kellie

 

 

 


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