Page 8 - Deal Round Up September 2020

Our beautiful boy was born on the 30th April 2014 Henry Nathan Lanaway.
At around age 3 we started noticing that Henry was behind in some of his Gross Motor Skills, i.e. running
slower than his friends, jumping and not alternating his feet on the stairs and using his hands to get off
the floor.
I spoke to the nursery and we agreed I should take Henry to see the Health Visitor to share our concern.
She had Henry walking up and down the stairs and checked him over and said we would be laughed
out of the room if she referred him. I took Henry again about 6 months later as the night before I was
on google and typed in delayed gross motor skills and that’s when I came across Duchenne Muscular
Dystrophy. I found videos of the Gowers sign, which Henry had and everything else seemed to be
pointing to that. I took screen shots to her the next day and mentioned his calf muscles. She said see
how he goes but she didn’t think anything was wrong and if the nursery wanted to refer him then to
let them, but she said he wouldn’t be sitting the way he was
if he had DMD and there was nothing wrong with his calf
muscles. I also took Henry to the doctors the next day and he
suggested I keep a diary for 6 months. Henry started school
in the September and I made them aware of the situation.
But Henry started to get some cramps whilst on his scooter so
we took him to a private massage therapist to see wh at
he thought. We also took Henry back to the doctors and I
wrote a list of all of his delays and that I was concerned he
had Muscular Dystrophy of some kind. He suggested I wait
another 6 months as he thought he was probably just a bit
delayed. In December, I couldn’t get this out of my mind so
ended up paying to see a paediatrician privately. He wanted to
do blood tests on Henry and to check his CK levels. We went
back on the 20th December 2018 and the paediatrician told us
he suspected Henry to have Duchenne. I have never felt pain
like I felt in that moment. I was listening to him tell me that
my son is likely to stop walking around 10 and the average life expectancy is mid 20’s. When people say
it felt like I had my heart ripped out, well it really does. He told us we would need a genetic test done
which was booked in for the 30th January 2019.
We tried to have a great Christmas but it was all a bit of a blur, Henry had his
blood test and we had to wait just over 3 months for the results. I think you
hope and pray for a miracle and that this top paediatrician did not have a clue
what he was on about. But he did and on the 9th May 2019 Henry’s diagnosis
was confirmed.
We are so lucky to have such wonderful children. Henry takes everything in
his stride, we have explained that he has poorly muscles but age appropriate
information and Henry’s sister Evie has been amazing. She is aware of what’s
going on and is heart broken alongside us but together we are going to fight
this as a family.
You will feel guilty for laughing when you have this awful diagnosis hanging over you. You will wake up
feeling sick every day and this is likely not to go away. It just gets a little bit easier to deal with. Take
each day one day at a time and love life as much as you can. We have no choice but to carry on for our
beautiful children Evie and Henry.
For more information about the disease please go to;
www.musculardystrophyuk.org/duchenne
If you would like to help and donate please go to;
https://uk.virginmoneygiving.com/HaydennSharpp

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