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Some may and some may not know that back on the 19th December 2016 my gorgeous little boy Louis was diagnosed with Duchenne muscular dystrophy – those 3 words that will haunt us for the rest of our life.
Phil and I felt like our hearts had been ripped open within seconds of hearing that our son has the most fatal muscle wasting condition in a child. After those words were mentioned I can just remember our doctor’s mouth opening & closing. I felt I had gone deaf & blind – all I could think about is how and why had our son got this horrid disease.
We sat for 3 hours with that doctor at Alder Hey that day whilst he told us things that no parent should ever have to go through.
Since December, day-by-day we have become stronger because we have too. We still have to get up and we still have to put a big brave face on in front of Louis and Jenson because we have to try and keep our boys as happy as they are now.
On Day 3 of the diagnosis I started reading books. I read information pages after information pages hoping there was a miracle out there somewhere. I was clinging on to every bit of hope but each day my hope was running out. That was until I met Alex Johnson, a Mummy to an amazing little boy called Jack who also has Duchenne.
She is the CEO of an incredible clinical research charity Duchenne UK alongside with another lovely lady called Emily Crossley who also has a son with Duchenne.
From this point on I was able to find out about all the different drugs and trials that Louis may be eligible to go on, not just to prolong his walking but to prolong his life. So again I did more research, including flying to Washington with Alex, to further explore our options which I was very lucky to have the chance to do.
Duchenne muscular dystrophy is the most common genetic killer of children worldwide and is characterised by progressive muscle degeneration and weakness. Children with Duchenne like Louis usually need a wheelchair by the time they are 8-12 years old or even younger as their muscles weaken and they lose the ability to walk by the time they are in their late teens. Some boys need full time ventilation until their poor hearts give up.
Phil and I have started our own little charity called Lifting Louis that solely funds Duchenne UK as we feel without this charity we wouldn’t be as strong as we are today. And most importantly we feel these lovely people are fighting for Louis and all the other boys that have Duchenne. The charity is lean and ambitious with 90% of donations going directly towards clinical research to find a cure for our boys and I pray each day that this will come one day soon.
Louis will hopefully be going on a trial by the end of this year or beginning of 2018. This is all thanks to the work Duchenne UK is doing funding research and clinical trials for this generation of boys.
Thank you to everyone who has showed us support in the last 6 months. Both Phil and I are truly thankful but we need your help a little longer. I know it isn’t just Phil and me who will be fighting for Louis over the coming years but it will be all our lovely family and friends too.
Thank you again, all our love
Laura and Phil x
Donate to Lifting Louis here.
Published on 31 August 2020Share this articleCategories Family and Friends Funds