31/05/2021
From midnight tonight until 23:59 May 31st 2022 the nominated Charity of The Year 2021/22 is DDX3X Foundation & the DDX3X Support UK. I am donating 10% of ALL sales from Scentsational Waxes & Sweet Delights to these charities. I'm also running a Go Fund Me to help a very special family whose daughter has this condition.
What Is DDX3X Foundation & DDX3X Support UK?
The DDX3X Foundation was founded in 2015 by parents of children with DDX3X. The Foundation has 3 primary functions: research, connecting families & raising awareness. They also support existing research, education & treatment programmes.
DDX3X Support UK is a recently formed UK based support group & point of information for British families affected by this genetic condition. Currently there are less than 100 cases in the UK. It was formed by 3 women, Clare, Maria & Sam, who all have children with DDX3X.
Both DDX3X Foundation & the DDX3X Support UK are non-profit making organisations
What is DDX3X?
DDX3X is a genetic mutation that occurs at conception on the X chromosome. Because of this it mostly affects girls but there are boys with DDX3X. It was only discovered in 2014 & to date there are only 649 known cases worldwide. It is linked to, & often misdiagnosed as, intellectual disabilities, Autism, seizures, low muscle tone, brain abnormalities & affects each person differently, for example some people can talk while others are mute. The most common symptoms are:
• Intellectual disability
• Developmental delays
• Low muscle tone/Hypotonic
• Difficulty with speech
• Epilepsy/seizures
• Movement disorders
• Abnormalities of the brain
• Microcephaly
Why Did I Choose This Charity?
February 2021, I came across a profile about a little girl called Beau-Lyn. She’s a 9yr old from Dagenham who has DDX3X. Over the following months the friendship between me & her mum Kim grew. I read up about DDX3X & the DDX3X Foundation & knew I wanted to help in any way I could so donated 10% of my sales from Sweet Delights to DDX3X Foundation & as of May 20th had raised £32.27. At that point Kim thought that the donating would end on May 31st but I still had a couple of surprises up my sleeve.
We finally met on May 22nd when I told her that I would continue to support the DDX3X Foundation but also the DDX3X Support UK until May 30 2022. I also told her that I wanted to help their family & help Beau-Lyn. As a parent with children with their own disabilities & struggles I appreciate how difficult it can be to meet their needs. So, I am setting up a Go Fund Me/Just Giving to raise funds for this amazing family.
How I Am Helping?
From now until 23:59 May 31 2022 I will be donating 10% of all sales from Sweet Delights & Scentsational Waxes to the DDX3X Foundation & DDX3X Support UK. Throughout the year I will be holding various events & sales to contribute to the two groups. I am also launching a Go Fund Me to raise money for the Fowell family. My aim is to reach £700 which would not only allow Kim & her family to do an online Sensory Workshop but will also to be able to continue to meet Beau-Lyn’s needs as she grows up. This launches tomorrow morning. If you can donate then we really are so grateful but if you can't right now then sharing the link, once it's live, is just as helpful, if not more.
A Message From Kim Fowell
I would like to introduce an amazing woman who I’m honoured to call my friend. Kim is Beau-Lyn’s mother & would like to explain a little more about her daughters needs.
“We first recognised Beau-Lyn had sensory difficulties when she was around 2 years old and have been fighting for help since!
We have tried to arrange for Beau-Lyn to complete a sensory assessment so us as a family can better understand how Beau-Lyn's behaviour is affected by her ability to process information around her. With children with sensory issues, their needs change all the time. So one year it can be one thing, the next year it can be something else. I need to be able to fully understand Beau's preferences, so I can adapt how I care for her from year to year.
There is only one online occupational therapist available at the moment to do the workshop and it costs £447. I applied for funding for this workshop but due to it being therapy with an Occupational Therapist, this cannot be funded as NHS are meant to give this but I've been told that this is not given in our area, which is disgusting!
A few months ago I completed 'Vicky Robinson's Free 5 Day Sensory Workshop' which was astounding. The 'Free 5 Day Sensory Workshop' helped me understand that I need the understanding of Beau-Lyn's sensory needs, not just a sensory plan made for her as sensory needs change. In this programme you gain the understanding to be able to adapt when need be. I want to learn as much as I can for Beau-Lyn and for her to learn strategies to help her self-regulate and to be able to cope with the world around her.
DDX3X Foundation do research for our families and are looking for a cure for DDX3X.
DDX3X Support UK has an aim to help families and individuals with the everyday problems living with DDX3X can bring.”
