Christopher Scott
Chris's Garden Machinery Services Open Day
Fundraising for RETT UK
Story
Thank you for taking a look at our story
Myself and my partner Lauren, welcomed our perfectly healthy and happy little girl Harley, into this world on Boxing Day 2016.
Harley took our lives by storm. Filling our lives and our hearts with undoubtable and undeniable love. Like all parents we want nothing but the best for our little girl.
Harley was the perfect little girl in every single way. Growing, learning and surprising us every single day, just like every other child her age.
When Harley was around 9 months old we noticed she was starting to fall behind her milestones, not rolling around, crawling or walking. Slightly worried, we spoke to a doctor to get some advice, in case this was just another case of “Every child is different” or “she will do it in her own time”.
From here on everything started to get a little hectic. Before we knew it, we had appointments coming from left, right and centre, each one exploring another avenue of investigation.
March 2018 we met with a paediatric doctor who told us that he was unsure if our baby girl would ever walk and that we had to do some genetic tests to get to the bottom of this.
Soon after we had bloods taken, MRI scans, sleep studies. All without any answers.
This continued up until December 2018 when we received a call asking us to meet with Harleys paediatrician. When Lauren and I entered that room - our lives were changed forever in the worst possible way. In that room a week before our daughters second birthday, Harley was diagnosed with Rett Syndrome.
A very rare, genetic disorder affecting around 1 in 15,000 girls.
With this diagnosis comes a world of upset, hurt, disappointment and anger.
A condition that there is no cure for and no medicine to make it better. A condition that means our daughter is not likely to ever walk or talk. A condition that means we will never hear our little girl say our names or tell us that she loves us.
After doing some research - we found that testing is being carried out and that they are hopeful to find a cure in the next two years. The word “cure” is a loose term, but it provides hope and that is what we must hold onto each and every day...hope.
Rett UK is our charity of choice as this is the closest to our hearts with the biggest impact and meaning behind it. The help and support that Rett UK can provide to people in our position is unbelievable.
On March 28th, at Garden Machinery Services, Hamilton, ML3 9SZ.
There will be an Open Day, celebrating a massive 40 years in business and a new premises.
On the day there will be a charity raffle, with the proceeds going to Rett UK.
There are lots of big name brands in attendance.
This page is for anyone and everyone who would like to make a contribution to this amazing cause and help someone else in our position find hope
Myself and my partner Lauren, welcomed our perfectly healthy and happy little girl Harley, into this world on Boxing Day 2016.
Harley took our lives by storm. Filling our lives and our hearts with undoubtable and undeniable love. Like all parents we want nothing but the best for our little girl.
Harley was the perfect little girl in every single way. Growing, learning and surprising us every single day, just like every other child her age.
When Harley was around 9 months old we noticed she was starting to fall behind her milestones, not rolling around, crawling or walking. Slightly worried, we spoke to a doctor to get some advice, in case this was just another case of “Every child is different” or “she will do it in her own time”.
From here on everything started to get a little hectic. Before we knew it, we had appointments coming from left, right and centre, each one exploring another avenue of investigation.
March 2018 we met with a paediatric doctor who told us that he was unsure if our baby girl would ever walk and that we had to do some genetic tests to get to the bottom of this.
Soon after we had bloods taken, MRI scans, sleep studies. All without any answers.
This continued up until December 2018 when we received a call asking us to meet with Harleys paediatrician. When Lauren and I entered that room - our lives were changed forever in the worst possible way. In that room a week before our daughters second birthday, Harley was diagnosed with Rett Syndrome.
A very rare, genetic disorder affecting around 1 in 15,000 girls.
With this diagnosis comes a world of upset, hurt, disappointment and anger.
A condition that there is no cure for and no medicine to make it better. A condition that means our daughter is not likely to ever walk or talk. A condition that means we will never hear our little girl say our names or tell us that she loves us.
After doing some research - we found that testing is being carried out and that they are hopeful to find a cure in the next two years. The word “cure” is a loose term, but it provides hope and that is what we must hold onto each and every day...hope.
Rett UK is our charity of choice as this is the closest to our hearts with the biggest impact and meaning behind it. The help and support that Rett UK can provide to people in our position is unbelievable.
On March 28th, at Garden Machinery Services, Hamilton, ML3 9SZ.
There will be an Open Day, celebrating a massive 40 years in business and a new premises.
On the day there will be a charity raffle, with the proceeds going to Rett UK.
There are lots of big name brands in attendance.
This page is for anyone and everyone who would like to make a contribution to this amazing cause and help someone else in our position find hope