So my girl should be leaving school this
summer.

It’s an exciting time of her life.

The beginning of chapters new,

The first big steps, to the rest of her
life.

She and all her classmates will be
looking back on happy memories of their school years,

I can see them now, laughing and reminiscing
as they try on their beautiful prom dresses and decide which way to
have their hair.

They laugh like there is no tomorrow, about
silly things which have happened, and funny things they have done together over
the years.

They make plans for limos, and work
out whose parents are the best bet for noisy sleepovers. 
Every parent
of course wants to see their little girl leave school having had the best time
ever!

To feel proud as she is picked up in
that said limo, flitting around without a care as she laughs with
all her friends,
 

I write that with deep sarcasm of
course, wishful thinking and a heavy heart.

It’s not going to happen.

Not only has molly had the worst few years
of her life and is a walking miracle to be here,

Her last day of school ever was 1 year ago
today. 
 No party, no prom, no signing shirts, no laughs, no goodbyes she
just left quietly by herself. Nobody noticed.

          We made the tough decision that
she should leave school this year because her health was getting progressively worse. The
idea was to home educate her so to pull her out of the germ pool which was
making her constantly ill and weak.

Moll had tried so hard, but
since diagnosis she was not building any solid foundations on
which to start repairing herself and getting stronger. 

she would get so far her health would
improve a little then she would catch another virus putting her straight
back to the start.

This would happen every few weeks.

 She had hospital education at home when she
was ill, they were very good. 

The last straw here came following
many bungled attempts for them and school to communicate.
Then the coordinator between H.E teacher and H.E office asked me ‘had
the Dr managed to sort molly out?’ because it was very difficult that i
could not predict when she would be ill.

This was when i realised that if
they didn’t understand her illness there was not a chance of anyone else
getting it.

            We moved house in to the catchment area for her school in 2008 because I
believed it to be the best school for her to be at.

It had a great name for its
pastoral care and I’d heard amazing reports about the learning suite
for special needs children. 

Molly was already a year behind, she
repeated the first year in primary as she spent most of age 4 & 5
in hospital.

 The teachers were
great, the rapport they had with the pupils was amazing.

Year 8 was her best year, even though she
still only had an attendance of 75% because of illness. By the end of year 8
moll was becoming very ill. It was around the June of that year that we
found out that there was probably something seriously wrong.

Tests in the August confirmed it; she was
slowing down and deteriorating every day. It would have only been a matter of
time without medication.

Thankfully they found the problem.

        We discovered that moll would be drug dependent for the rest of her life, and
that she would need to carry a life saving injection with her everywhere
she went.

As a family this news was shattering.
It takes some time for something like that to sink in and when it does
it’s like a knife through your chest.

You only start to digest it as time goes on
and NOTHING else in the world matters until you do.

That is why schools, teachers, doctors should take this in to
consideration when dealing with the parents of a sick child. In September moll was due to return to school
I went up and explained her new medication, the injection and the
circumstances in which she would need it.

To be fair her form tutor, the nurse
and the head of year were fantastic and very understanding. They were also very
willing to administer molly’s injection in a life threatening
circumstance if needed.

(Like you would give an inhaler to an asthmatic
or an epipen to an allergy sufferer) Obviously.
I got home and was so happy and relieved they had been so supportive.

Then the phone call came.

On the heads instruction, they would
not be giving molly her injection if she needed it because they were not
trained. 

End of. 
No negotiation no intention to sort it out.

On top of the current turmoil I was
suffering this made me feel sick. I was sure I could not take any more.

So you will just stand back and watch my
child die because although you know how to do this you will not? I believe it
was all to do with liability if anything were to go wrong.

Although now I discover this drug is
legally allowed to be administered by ANYONE because it is a life
saving medication.

Although this was an unlikely event (she
had lived through this risk for 14 years). I could not then responsibly,
send molly in to school knowing they would not give her this treatment to
save her life.
 Things now seemed 1000 times worse; to be
honest you just need people on your side in times like these.

It felt like someone had blown my world in
to pieces and was now stamping up and down on it, smashing whatever pieces
I had left in to the ground. 

          Thankfully, I pulled myself together and contacted  molly’s
nurses who agreed to go and train everyone.

I was so grateful to the teachers
who were trained that day. 

But it did not change the schools attitude
towards her rare condition they just did not seem to get the seriousness of it;
I thought I was going mad. May be I was making too much fuss?

But I was not alone. 1000’s of parents
of chronically ill children are going through these battles daily.

 And
battles on top of that, they are now being threatened with court action because
of poor attendance records.

It is just not acceptable this needs to be
a recognised condition.
 I opened a support page to campaign for better medication,
research and awareness all of which is a total shambles, 

I currently receive emails on a weekly
basis, from parents worried sick because their school just does not understand
the condition, there is no international protocol in place for schools. This
is a life threatening condition how loud can we shout about it?

I created an awareness day which is now in
its 3rd year. We have held 100’s of Molly’s picnic events all over the world. 

School’s participated, work places held
events worldwide.

But Molly’s school ignored every single
email I ever sent them about it, 

Not one of them turned up at her
picnic, not one of them circulated the 10,000 signature strong petition to push
for the new emergency injection pen device. 

Part of moll’s condition (adrenal insufficiency) is the fact that a simple
sickness bug could be fatal because she would not be able to absorb her
medication.

Despite being told this many times not once
did the school send out a letter to all parents informing them about the importance
of remaining off school for 48 hours after a sickness bug.

These letters were however sent out for
other pupils who had under gone other medical treatments for more
commonly known illnesses.

Molly’s attendance was at about 25% for
year 9 and 10. She’s a bright girl and I wanted her to have a good chance
at her gcse’s

 Her consultant says it may be 5
years before any normality will return, purely because she has become so weak
and has survived without treatment for so long,

she can barely walk now. 

I asked if she could repeat year 10, they
said they didn’t have room and that I could send her to college (she can’t even
walk to the bus stop).

We decided on this note to make the break and
home educate we had done everything possible to keep her in school and so sent
a letter to the head.
This was one of the toughest decisions of my
life. 

She was to leave in the summer.
           

Following the Easter break Molly returned
to school.

 Many teachers said to her ‘Oh we
thought you had left!’

I got a panicked phone call (again not
from the head) asking me to clarify when molly was leaving,
 

They said they were not sure.

Moll had it made very clear on that day
that she shouldn’t be there, this upset her a lot. 

So I’m not sure what they meant by ‘not
sure’ it seemed quite definite on their part to me,

Unless of course all of those teachers had
gone insane.

To my horror my poor letter writing skills
were to blame for this ‘mistake’ as was stated by way of abrupt letter from the head
following my rant on social media that evening.

So that’s why Moll has no prom, no dress,
no friends to be excited with, just the same old uneventful life which has
become.
 How did she deserve that? After she has spent her whole life fighting
illness? You tell me.
 All i know is that every child is different and we aren’t
all lucky enough to own an average one who will fit in to the perfect boxes the
education system feels they should be in.