Deisha Magic Stevens

1. DEISHA MAGIC STEVENS
A fight for life

2. THE BEGINNING OF HER FIGHT
• At the 20 week scan we were told that Deisha had brain damage and we
should abort the pregnancy .
• At birth the mid-wife told us that our daughter was dysmorphic before she
was placed in the special care unit until we were transferred to the Mater
Childrens Hospital .
• Over the next 5 weeks she was repeatedly tested for her ongoing health
issues as well as her unknown genetic condition .
• At the end of week 5 we were told she needed heart surgery asap as she
wouldn’t live past 3 months of age . She had 3 VSD and 1 ASD ( holes in her
heart ) as well as her hearts PDA valve needed to be surgically closed .

3. • We had to sit and watch our daughter detieriate as her surgery was
cancelled 5 times due to the lack of pediatric ICU beds available
• This was unacceptable and I wrote to Premier Beattie explaining our
daughters plight as well as others in the same situation . A copy of the letter
was also sent to the Courier Mail . ( A few weeks before the election )
• The next day Deisha was front page news and quite ironically she had her
surgery the following day ( Ekka Show Day )
• After Deisha’s surgery she spent the next few weeks in ICU , the reporter
came back to do a follow up story and shook my hand , he said
congratulations you just made the Premier spend 772 million dollars on a new
purpose built Childrens Hospital in Brisbane

4. • We took Deisha home and let her be just like any other baby
• They continued to investigate her genetic condition but found no answers
• At 18 months of age we decided that we wanted to bring Deisha up in a
smaller community , so a sea change to Coffs Harbour and I became her
fulltime Carer.
• Over the next few years Deisha had 9 various operations
• Deisha also developed anaphylaxis to all nuts with respiratory failure within 5
minutes
• With a chance encounter with a Geneticist in Coffs Harbour , Deisha was
diagnosed with Rubinstein-Taybi Syndrome

5. THE FIGHT CONTINUES
• In 2010 Julia Gillard announces a policy for children who have a disability
called Better Start . It was a program that gave children with a disability
$12000 for access to speech therapy , occupational therapy and Physio
therapy . Unfortunately the program was limited to 5 genetic conditions .
• So children like Deisha received no funding or help , this was unacceptable
and discriminated against these children and their families .
• I lodged a complaint with the Anti-discrimination Board against the Federal
Government . It was a long battle but in the end we won and Deisha was
able to receive the Better Start program . ( I had to sign a non discloser
waver )
• This set precedence for other families to follow suit .
• http://youtu.be/cHsvYqJyi5U

6. • It was exciting time at the start of 2012 as Deisha was about to start school
and we decided to send her to a main stream school . Our excitement soon
turned to disgust when we received a letter from NSW education
department stating that Deisha had a Teachers aid for 15 hours a week and
was not allowed to attend school outside those 15 hours . This was illegal
• I took NSW education to the Australian Human Rights Commission , they
gave NSW Education 7 days to respond . On the 7th day we received a letter
from the Minister stating that they found some more regional funding and
Deisha would now have a fulltime aid and be able to attend school fulltime .
• NSW Education department then locked it in for 3 years

7. THE REAL BATTLE
• In 2009 Deisha had her first seizure , little did we know then what was to lay ahead . We saw a Neurologist and
she was given a anticonvulsant and we thought that would be it .
• This wasn’t to be. Deisha’s seizure activity began to spiral out of control to the point where we would find her in
bed not breathing , some seizures lasting up to an hour , she would be in non convulsive status for hours , she lost
all functions .
• Nearly weekly Ambulance trips to Hospital and the resuscitation room , 3 times into ICU , dozens of hospital
admissions , trips to Sydney every 8 to 10 weeks
• Every night we put our daughter to bed we didn’t know if she would still be alive in the morning .
• Deisha was on seven anticonvulsants and prednisone and still had seizure activity every 5-8 seconds .
• We even took her to Melbourne to see Ingrid Scheffer ( World leader in pediatric epilepsy)
• In the end we were told that conventional medicine had no more answers for Deisha and we could expect her
to continue to regress or die from her seizure activity
• Deisha was having seven types of seizures as well as non convulsive status
• Deisha’s epilepsy was consuming our whole family
• I wasn’t about to give up on our daughter !!!

8. THE ANSWER BECAME ANOTHER BATTLE
• We did our research and found a little girl in Colorado who was using
Medicinal Cannabis to successfully control her seizures
• Having never used cannabis recreationally it was all a huge change
• After a trip to Nimbin to listen to a forum on Medicinal Cannabis , Deisha
started using it a week later .
• Within 3 days we started noticing positive changes within Deisha
• Within 3 weeks she became seizure free and 10 months later remains seizure
free
• Deisha has now just about totally weaned off all her nasty anticonvulsants

9. BEFORE AFTER
MEDICINAL CANNABIS

10. • From the beginning of our journey with medicinal cannabis we have always
been open . Deisha’s Pediatrician , her Neurologist , her Local State Member
and her School all knew she was using medicinal cannabis
• After being on medicinal cannabis and seizure free we decided to go public
so other families wouldn’t have to go through the hell that we had endured
over the past 4 years and quite possibly save a child's life .
• The response was over whelming and 99% positive
• Unfortunately we were reported to Community Services
• When Community Services came to visit us we had our local state member
Andrew Fraser in our lounge room . He fully supports us in our journey
• When Community Services left , they deemed Deisha Safe and case closed

11. LITTLE DID WE KNOW
• Over the next few weeks , I did newspaper articles , television and radio interviews .
All trying to make the government listen and include children with refractory
epilepsy into the trials of medicinal cannabis .
• Andrew Fraser spoke of our case in parliament
https://www.parliament.nsw.gov.au/prod/parlment/hansart.nsf/V3Key/LA201410160
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• We then had a visit at home by Catherine Cusack ( parliamentary secretary to Mike
Baird .
• Then on the 18th of December I received a phone call from Catherine Cusack to say
Mike Baird will be making an announcement to include children with refractory
epilepsy into the NSW medicinal cannabis trials and with our permission they would
like to use Deisha for their exclusive press release in the Sunday Telegraph .
• This was huge and unprecedented , not only did the politicians listen to us but they
actually acted
Catherine Cusack

12. THE CURVE BALL
• While we were battling to save our daughters life and give her quality of life .
I was diagnosed with esophageal cancer om march 28 last year
• I have done two lots of intense chemo and radiation and have been told
that its incurable .
• That is their opinion and I will now have to focus on saving my life and my
family
• There is a lot more to tell but this is just a brief outline

16. SOME LINKS TO VIDEOS OF DEISHA & OUR FAMILY
• http://youtu.be/mmDn2b5yrhY
• http://youtu.be/lAb77Uxepn8
• http://youtu.be/NPMKzPdOLyU
• http://youtu.be/GeTTQpaedk0
• http://youtu.be/QWeK4wfWNHE
• http://youtu.be/Upd-UcktN6w
• http://youtu.be/h8oTJmrgK9o
Myself & my seven beautiful children