My Baby Boy
14/07/2013, Erdington, Birmingham, UK.
2011
We lived a normal family life back then; we were a happily
married couple with two children. Ella May was our first born, she was 3 at
that time and we had the perfect family with the arrival of our winter baby
Luca David in the autumn of 2010. The biggest smiler you could ever meet.
But not every fairy tale has a good end, not in real life at
least. I am just a dad, my name is Antonello Atzori and I relocated from Italy to UK back in 2002, I married my British wife Zoe in 2008.
During 2011 I was running my self-employed gardening
business with passion, determination, and willingness to make it successful
through hard work and professionalism, and I was living a life like any other
person normally would.
Luca was growing all right like any child of his age would
grow and he was a happy little man until one Saturday night, in October 2011,
when our little boy Luca fell ill and started fitting really badly. I had just
finished a shift at work when my wife rang me saying Luca wasn’t well, so I
went straight back home to find him and Zoe in a ambulance while Ella was at
the front door step with our kind neighbour, Luca had to be rushed into
hospital were he was soon plugged into a beeping machinery, he had drips into
himself, wires coming out of his arms but we felt he was in the right place,
yes he was indeed. In the next days Luca had lots of tests done, blood, eyes,
hearing, everything a doctor could think of. Every single test came back
negative as if Luca had nothing, and so we took him back home with us with the
feeling he was ok, he probably had just a bad fit and that was it.
In a month time the same thing happened again, Luca was
sleeping over to his Grandma this time
when he started fitting, an ambulance was called out again and in no time was
at my in-law door step, by the time we went to hers the paramedics were already
working on him and his fits. Same story, he was rushed into hospital, plugged
into all kind of machinery and tested for even more conditions. He had wires
everywhere, he was sweaty, tired, he wasn’t my happy little boy anymore; he was
serious all of a sudden. And so he will be from this time on. At the hospital
my wife stayed with him all the time, I carried on with work during the days
and tried to live my everyday work life until an heartless doctor walked in
Luca's room with a group of students to read to my wife a made up diagnosis,
according to her Luca was affected by SMA (spinal muscular atrophy), a rare and
life threatening genetic disorder. She read this diagnosis to my wife in front
of a bunch of just about teenager students, she had not feelings whatsoever or
respect for a mother in a really stressful and painful situation she was on for
days already. The group then left the room leaving my wife, a mother, in tears
to cry on her own next to her child. Surprisingly the doctor was a woman and
surely she should have been more sensible.
We accepted the diagnosis, God only knows how much it did
hurt, but we had to face the reality and we had to care for Luca as best as we
could do, I went to deep researching about this condition and I can say I now
know a lot about it, I spent hours trying to learn as much as I could and to be
prepared for the future with a disabled SMA child.
After a month we had another hospital appointment for Luca
and do you know what? A different doctor said to us that Luca was not affected
by SMA. WTF we replied. We are in a living hell; this is no time to play and
most of all not the right subject either, a 12 months old baby boy. Yes this
doctor was right, Luca didn’t have SMA, but he didn’t know what Luca was
suffering from, he had to be tested for many more things. We were so referred
to a specialist, a wonderful woman called Dr Roper specialized in children
genetics. When we first went to see her she had already ideas of what Luca
could be suffering from, but she didn’t say anything. That day I held him while
a blood sample was taken from his body, the nurse could not find his vein and
Luca's crying keeps bouncing in my head still now, he was in pain with big tears
in his eyes while I had to hold him tight to myself. My baby boy.
Even now that I am writing this I have tears in my eyes, and
my hearth has a never healing scar which bleeds at times more and a times less,
I know this scar will never heal and that I will have to live with it for the
rest of my days.
In January 2012 Luca had a muscular biopsy, a surgery
operation which had to be executed with total anaesthetic, we were asked which
leg we would have preferred to have a piece of his muscle cut from and I said
the left one, I knew more blood pumps in the left side of the body so he would
not feel any difference in the years to come, but this was just the hope of an
ignorant, stubborn dad.
In about a month time we had to go back to the hospital, the
diagnosis was ready. It was the 7th of February 2012, it wasn't any good news,
Luca was diagnosed with Infantile Tay Sachs, a very rare life threatening
genetic disorder. We asked the doctor what that meant, how Infantile Tay Sachs
is going to affect him, she said he will turn deaf, blind, he will never move
or talk and he will die by the age of 4, that's how long these children live at
the most, Luca was then 15 months. He was born with it but Infantile Tay Sachs doesn’t
show any symptom until the child is about 8-9 months of age, Luca was 1 of
the 2 children affected by Infantile Tay Sachs in a Country called Great
Britain of 60 million people, one of the only 2 babies suffering from this
form of horrible disease, the other baby was called Archie and lived in Wales. My baby boy. Dieing. This day is what I call my
"Year Zero", my life was reset that day, the way I used to think
and behave changed from then on, you see, when you have children your grow with
them in the years to come but when you receive a diagnosis like this and have to
absorb such of shock you grow in that exact moment, just then you become a
fully grown adult instantly, everything you always thought is suddenly put on
one side and you doubt about everything and anything.
The reality was far too cruel for anyone to accept and my
life was affected by what it could be called a "brain short-circuit",
a moment of your life where an excessive amount of emotions flows directly into
your brain without resistance causing a permanent damage in the way you behave,
see and live your life. You take your child at home, you cry with him, cuddle
and kiss him, love him with all your heart but you can't help him, he will die,
nobody ever survived from Infantile Tay Sachs.
We were referred by the Hospital to a centre called Acorns
Children's Hospice, in Selly Oak, Birmingham UK. A member of their staff called
Anne came to see us in our home shortly after the diagnosis and we were booked
in for a day visit at their premises. There are 3 Acorns centres around our
area and we chose the one in Selly Oak, the decision to go there was taken
purely because is the closest one, I am sure the other 2 centres are just as
good.
And so we started our journey of pain with them.
Acorns is a charity that without charges cares for
terminally ill children and their families, that is what Luca was now, not the
happy and smiley boy he was before. The hospice was very tidy, the staff
members helpful, for Luca there was a swimming pool, a sensory room, lots of professional
advice, a massive garden very well looked after by volunteers and lots of toys
for Ella's too. Since the diagnosis we started to visit Acorns regularly in
order to be more familiar with the place and to make Ella more comfortable for
the tough times ahead.
One day at the end of January 2013 Luca fell really ill, his
lips turned blue because his body wasn’t oxygenating properly, we put Luca in
the car and took him straight to Acorns. He was really bad, I clearly remember
myself looking at the car mirror while I was driving and seeing Zoe's tears and
Luca's blue lips breathing heavily sitting at the back while the
radio was playing a song called "I Giorni" by Ludovico Einaudi (http://www.youtube.com/watch?v=Uffjii1hXzU), a
song that became the soundtrack of our pain. As soon as we arrived at the
hospice 2 staff members were already waiting outside, they picked up Luca and
gave us a room to share with him. The nurses gave him an oxygen mask; we sat
next to him all the time of the day and the night. For days we were fed,
offered teas and coffees, we had breakfast, lunch and dinner cooked every day.
Ella came to visit us regularly and members of staff entertained her every time
taking her swimming, or just to do some colouring or to play in the garden
outside.
Luca was fighting for his life, no doubts about it, but I
always thought he could make it, until the 2nd of February. It was night time,
about 11, two of the Acorns nurses came in the room and noticed Luca wasn’t
doing well at all, they tried to feed him but he kept been sick, he filled his
nappy several times, the nurse looked at me and Zoe and said that if we wanted
to call a member of our family to come this was the right time to do so, his body
was shutting down. We rang a close family friend Fiona, and we asked her to
come with the priest to give Luca a blessing, they came straight out and Luca
had a deserved Christian blessing, then they went.
The night was going really slowly, I tried to rest in bed and
shut my eyes for a bit but I couldn’t sleep. Then at about 4am both nurses said
to us that Luca was going, anytime now. Me and Zoe looked at each other, what
to say? What would you say? Nothing. We only asked them if we could hold him
and so we did; we took the oxygen mask off him and hold him in bed with us.
His heavy breathing got noisier and heavier until suddenly
it all stopped, in mine and my wife's harms Luca stopped breathing. And you
know what, he had a smile on his face, he looked peaceful and he had a happy
face while I have now tears in my eyes again because writing this is bringing
back all this memories but it has to be done, yes it has to be put in writing
in order to be remembered. I am convinced that Luca was happy to die, no more pain, no more feeding
machines, no more medicines, no more physio, he was a free soul now. His faulty
body couldn’t manage anymore and his soul flew free above us, straight to the
sky to become the brightest star and look over us all.
Unfortunately he took a big chunk of my heart with
him.
After Luca died he stayed in the room with us for few ours,
we washed him and changed him, his body was getting colder and stiffer, but it
was something a parent must do for his own child. You see, if we went to a
hospital instead of Acorns Luca would have been taken away from us, we would
have not been able to do many things. Like in a Hospital, at Acorns we had the
support and care from qualified nurses and doctors for Luca but with more
flexibility basically, and I would like to send a big thank you to the 2 nurses
that made the death of my son as smoother as possible with all their
professional knowledge and their mother's hearts, I still don't know how they
manage to do such of job but God knows how much we need women like them in our
society.
Luca passed away at Acorns Children's Hospice Saturday the
2/2/2013 at 4:37am; he was taken away by Infantile Tay Sachs at the age of 26
months.
We stayed at the hospice for another week, we were given an
apartment in the premises upstairs while Luca was relocated in a refrigerated
room all for himself. We decorated it with all his things, photos, flowers, his
toys, and regularly I was visiting,
cuddling and kissing his cold lips, reading him stories and in that cold room I
wrote, played with my old acoustic guitar and sang him a song, don't ask me why.
The hospice also arranged for us an appointment with a funeral director, and we
were taken by a staff member to the registry office to register his death.
We had Luca's farewell the 10/02/2013.
This story you are reading is all true, all of it, real lives
are not movies.
Since the day of the diagnosis we have been raising money for Luca through our organization called Luca Loves Life Appeal:
The majority of the money we raise is regularly given to Acorns Children’s
Hospice, and we will always help them. Nobody, no charity could have helped us
more than they did, nobody. My new mission in life is to raise as much money I
can for them for the rest of my days, to make sure centres like these will stay
open for ever, we know that at this year 2013 to look after a family in the
hospice it costs about 750 pounds per day, we gave them roughly 10.000 pounds
which has potentially helped a family for about 13 days but they will need more
money, and more and more, a year has 365 days and other unlucky families and
children do and will need the services from Acorns, as a organization
Acorns cares for 640 families, they need
financial support so please I want you to understand that what happened to us
and to Luca could happen to anyone.
Children like Luca are what my wife calls "Limited
Edition Children", and they are indeed, and so Acorns is a place
specialized in Limited Edition Children.
Please, whichever way you can, help Acorns Children's
Hospice. Show the world how big your heart is, visit their website and feel
free to enquire about how to help them.
When you choose to help a particular charity there is
nothing to win as reward, no medals or fame, no money as a prize, I wish there
was something like the "Oscar" for people who volunteer and give everything to
the others, it would be nice to know who these people are and that people like them still walk on our planet
of pain making it a little bit more lovable.
This is just one story, unfortunately mine.
http://www.youtube.com/watch?v=3ft_lFEjjR4
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