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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 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 (DMD).
I found videos of the Gower’s 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 nursery wanted to refer him then to let them, but she said he wouldn’t be sitting the way he was if he did have 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 what he thought. We also took Henry back to the doctor’s 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 six 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 heartbroken 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.
You can donate to Henry’s Hurdles here
The Lanaway Family