“I met with
Katie’s grandmother Beryl...
Katie's
father, Ian Histed, is a self employed
builder and struggles to make ends meet. He
spends his time working very hard to fulfil
his commitments to his work as he has to be
available to help Teresa, his wife, when
Katie needs to go somewhere. He also has to
be available when Katie gets ill, which is
very frequent (at least 50% of the time, and
seriously ill 25% of the time).
He
usually has to work Saturday mornings
because his work has run on due to the time
Katie and Teresa require in the week.
Being a
builder and looking to save money on works
around the house, he has started, but not
been able to finish, the extension they put
on downstairs. This was started before they
knew Katie had Cerebral Palsy (that
discovery was made before her second
birthday).
Then work
started on widening the doorways and opening
the kitchen up so that they could get
Katie’s wheel chair in. However, he really
does struggle with energy to do the work in
the house at the weekends, and in my opinion
is probably suffering from exhaustion, as neither
Teresa or Ian have had a night off since
Katie was born.
Beryl didn’t
say that Ian suffered from exhaustion,
frankly Beryl helps out on a daily basis...
and talk about spirit.
I think he
doesn’t do the work because he would rather
spend time with Katie than carry out the
works as they don’t know how long they have
with her. Also working with plaster dust and
other building material dust is extremely
bad for Katie’s health. And they cannot even
move out and have the works done, because of
money and because Katie won’t sleep in any
other room than her bedroom. Katie has
gotten ill on the odd occasion they tried
it. The state of the house is a constant
strain on the family's life.
Their
household bills are very high as they have
to keep the house warm 24 hours a day.
Last year they
raised £13,000 to put in a hydro therapy
pool, there were many people who helped out
here and the money was raised for all of the
actual materials. Ian said he would lay the
base to save the money. The money is sitting
in a bank account waiting for Ian to find
the time to start work.
Katie's
mother, Teresa Histed, dedicates her full
time career to Katie, and I do mean full
time.
The only
government support she has been offered in
the care department is for two Outreach
workers. She did have 2 girls coming for 2
hours a week working together. This has now
been changed to 1 girl for 2 hours, and then
another girl for another 2 hours. So instead
of 2 at a time for 2 hours in total, it is
now 2 girls separately doing 2 hours each.
Now Katie can get into real trouble really
fast, and Teresa is terrified to let
un-skilled workers work unsupervised with
Katie for obvious
reasons. And frankly 4 hours a week is
nothing at all.
Teresa needs a
qualified Paediatric nurse and even then
Teresa would not want someone forced on her.
I said to Beryl, if Teresa could interview
and chose the nurse, then would that be ok?
And she thinks it would.
At night time,
because Katie can’t swallow, they have to
lay her in bed in the recovery position
where she proceeds to soak her pillow every
two hours or so. I can only imagine the
sleep depravation after 5 years of getting
up every few hours.
Katie got ill
last January 2008, and what happened was truly
horrific. Effectively she couldn’t breath
out, but she could breath in, so the air
started to puff up her head from the inside.
They rushed to the local hospital which is
less than 5 minutes away, and by the time
they were there Katie no longer had a face.
It was
diagnosed as Cervical Emphysema, and it was touch
and go for several weeks but she recovered
and is back at home now. I’ve included some
pictures taken whilst at the hospital. Katie
can only go out on days where the weather is
mild and not hot, not windy, nor cold... for
fear of this sort of occurrence.
Three times
she has died and been brought back to life,
the Doctors now say that they don’t expect
to see her live past 12 years old.
Then comes in
my opinion, a family member that really is
remarkable... Katie’s elder sister Kerry. Kerry is 15 and
has basically had to come second to
everything that her parents can do for her.
Katie comes
first, and Kerry is still in the top element
of her class at school. Teresa probably feels guilty
about the lack of time she can give to
Kerry, and always goes to collect her from
school each day. Whilst away Beryl looks
after Katie. Beryl herself doesn’t really go
out anymore as she has to spend so much time
with Katie. I met Beryl at her friend's
house and her friend told me about how they
used to go out somewhere daily, but since
Katie came along this doesn’t happen anymore
(Beryl is in her mid 70's).
From what I
can see they have one luxury item... Kerry
attends dance classes weekly and that costs
them £2 - £3k per year. Obviously the family
can’t have holidays, so Kerry occasionally
gets to go on a school trip or a dance class
trip.
Up until Katie
was 5 they attended a school in
Billingshurst, the Dame Vera Lynn School, which taught the parents how
to handle their children. They all found
this extremely beneficial, and Beryl would
like it to be noted that they do such a good
job, but this was only
free until she became 5, of course they can
no longer attend the school.
Before she was
ill in January, Katie attended a school
local to them called Chailey Heritage. The
school is extremely well known and respected
locally and Katie really benefited from her
time there. This is paid for by the
government at a cost of £30,000/year.
She was
supposed to go daily but obviously she was
regularly too ill to attend everyday. So the
family liked Katie to attend school 2 days a
week. They then wanted the government to
spend the remaining resources on equipment
for Katie. They asked the
government if they could have £12,000 to
attend the school 2 days a week (as that was
roughly all they were attending it) and then
could they spend the other £18,000
(currently then being wasted) on other items
for Katie... like a bigger wheelchair, or a
new standing machine as she regularly grows
out of them.
This was not
possible because that is not how the
government rules work. It is £30k for full
time attendance or nothing.
I asked Beryl
what she thought of the government and she
just said, I try not to speak ill of people.
Then in September last year Katie got ill
and hasn’t been to the school since then.
The government is still paying for 100%
attendance and they are expecting a letter
any day saying that Katie can no longer
attend the school as they will withdraw the
funding.
Katie needs to
bath daily as she is completely incontinent.
They asked the government for a new bath
chair
as the old one has rotted away. They
currently have a struggle each day getting
Katie in the bath. Last September they received a letter
from the government, and they were told that
they had been put on the emergency list for
a bath chair.
I asked Beryl what she thought would be of
most value to Katie and her family if money
wasn’t the object.
She said that
getting the home in order would be a
priority so that Katie's wheelchair can get
around, and she can therefore participate in
everyday life. Now some may see this as us
paying for work that Ian should do, I don’t
in the slightest as I think many know what
its like to live in a home that’s half
constructed or under serious repair of one
sort or another. And we know how challenging
or inconvenient this situation can be even
in normal living circumstances. Well, these
aren't normal circumstances, as I'm sure
everyone would agree, and they simply don't
need this extra burden. I have no issue
helping here.
Here’s what I
think we should raise the money for:
-
A bath
chair,
stuff the b***dy government this is only
£300ish I would have thought. Let's make
sure they have this asap.
-
We should
pay to bring the house up to spec so
that Ian doesn’t lift a finger other
than making sure the dust isn’t getting
to Katie. I would say the work could be
cracked out in less than 2 weeks with a
full crew in there. Probably won’t be
two weeks solid but should be done
within a month. £3.5 - £4k
-
We should
pay for the base and path to be laid to
the hydrotherapy pool that would benefit
Katie so much (£2.5 - £4k). My company,
Passive Investments, will handle
building quotes and project manage the
job and apply suitable pressure to the
builders to get the work done as
inexpensively as possible.
-
Katie
needs new equipment for walking,
wheelchair, etc as she has grown out of
them, obviously the government doesn’t
supply anything like this, I’m sure they
would if Ian didn’t work though! (£1 -
£2k)
-
What would
be really good then is to provide some
relief for Teresa and Ian with the help
of a professional nurse. This would have
to be discussed with Teresa as she
wouldn’t want a full time intrusion, but
just someone to work nights would give
them the extra rest they need. I would
imagine that 5 nights a week would cost
in the region of £25,000/yr.
-
Then I
would say that 2 days a month at the
school in Billingshurst would really
benefit both Katie and her parents. So I
estimate £4,800/yr.
Total hard cash = £10,600
Total for 1
years care = £29,800 (we should aim for at
least 3 years to start)
TOTAL TARGET DONATION AMOUNT = £100,000
This certainly
won't cover everything, but at least it
would make their lives infinitely more
bearable.”
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