Alison and Phil wrote:
This picture (right) was taken of our son Harrison Honey, 6 months before he got sick with CFS/ME.
He was just turning 11 years old and it was his last day at Junior School, Year 6.
This was taken at his leaving concert. The theme was :-
‘Reunion 2020 – what you had become’.
Harri has always wanted to become an Airline Pilot ever since we can remember.
A week after the above photo was taken, we flew out to Grenada in the West Indies, for a wonderful two week holiday. My brother was getting married out there and what a wonderful day it was!
Harri had such fun celebrating with his little sister, Lydia, (then aged 2)
and his younger brother Jayden, then (aged 8).
On the return flight home, he was fortunate to be able to visit the pilot who showed him around the cockpit.
He was so excited.
In the September of 2010, he started his new Secondary School and all was going well, he had settled in well. Everything was normal.
Sadly in January 2011, six months after our wonderful holiday to Grenada, he became very sick.
Little did we know then how it would change our lives as we knew it.
Three months later he was diagnosed with CFS (Chronic Fatigue Syndrome)/ME (Myalgic Encephalomyelitis) which is a serious neurological condition.
His symptoms can fluctuate daily, the symptoms can come and go, or they can ease or get worse. Symptoms he has suffered include, apart from the on-going obvious debilitating fatigue, problems with his brain and central nervous system, resulting in loss of memory, concentration, balance, coordination and fine motor skills.
Experiences difficulty with sequencing words and numbers, speaking, thinking and absorbing information.
Muscular weakness and can often be seen twitching or having muscle spasms.
Exhaustion up to 72 hours after effort. Even minimal exertion (cognitive or physical) can trigger exhaustion.
He has abnormalities in sleep rhythm (i.e. insomnia), appetite, temperature control, digestion, blood pressure, circulation, dizziness & nausea, bouts of racing pulse (tachycardia), particularly upon standing.
Development of sensitivities (e.g. to light, sound, touch), mood swings, panic, anxiety or depression which is a result from brain dysfunction and the distress of this misunderstood illness.
He has spent about seven weeks, on two
separate occasions, in hospital as an in-patient where he was
receiving regular monitoring, play therapy, hospital school, and
physio, to help him regain the strength to walk, as his legs were
like jelly and he didn’t have the energy to be able to stand. He
has also spent at least six months at hospital as an out-patient. He
has endured various hospital tests, including many blood tests, MRI
brains scans, EEG’s, ECG’s, blood pressure monitoring and Tilt
Table testing.
He will be 14 years old this July and
although his illness is not life-threatening, during these last two
years his young life has been completely put on hold in every way and
he has been pretty much housebound. The impact upon the family has
been devastating, especially for his siblings, which then becomes
another issue you have to face. Life is far from normal, but we do
our utmost to try to make it as smooth as possible.
Harri was always a bright child,
extremely academic and very sporty – there are not many sports he
has not tried. I think ‘Free Running’ is one of the few yet
still to try and this is something he would love to try out one day.
He has sadly now missed out almost
three school years and misses all his friends that he had made –
and all the activities he used to do, just being an ordinary boy. He
just wants his life back as he knew it. He can now barely walk 100
yards without feeling awful and has to rely on his wheelchair. Even
standing up proves difficult as he begins to feel dizzy & sick.
We can't rewind time, and as precious as it is, it keeps passing him
by. He gets particularly upset around special events such as
Birthdays and Christmas understandably as it sparks yet another
reminder of time passing him by.
It is still such a misunderstood
illness and continues to baffle the medical world.
So in an attempt to feel that he is at
least doing something to fight his illness he decided to raise money
for a charity called IiME and by doing this helps to raise awareness
and ultimately find a cure.
He has been completely overwhelmed so
far by everyone's generosity and this has helped give him a boost and
lifted his spirits.
We would like to say thank you for your
time in reading this – and extra special thanks to anyone spending
an extra two minutes of your time by clicking on the Just Giving link
below:-
Love Ali & Phil Honey
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