Mum of girl with rare genetic condition vows to keep raising awareness

Dagenham girl suffers with rare genetic condition

Beau-Lyn Fowell is one of around 650 people diagnosed with a rare genetic condition called DDX3X. - Credit: Kimberly Fowell

The mum of a girl with a rare genetic disorder has vowed to keep raising awareness of the condition.

DDX3X is linked to intellectual disabilities, seizures, autism, low muscle tone and slower physical developments.

It's so rare that Dagenham youngster Beau-Lyn Fowell is one of 649 known cases in the world, according to the DDX3X Foundation.

The condition itself was only discovered in 2014, while the nine-year-old was diagnosed last July after a long quest for answers.

Dagenham mum and daughter getting hair cut for the princess trust

Kimberly and Beau-Lyn are each having their hair cut by at least 14 inches each on May 27, with all money set to go to the Little Princess Trust. - Credit: Kimberly Fowell

Driving that fight was mum Kimberly Fowell, who spoke to the Post about life with Beau-Lyn.

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She has set up an Instagram page for her daughter to help raise awareness for any parent whose child is displaying similar symptoms.

Kimberly said: “It only takes one or two people to see her story – that's why I started sharing Beau-Lyn's journey.

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“I noticed something wasn't quite right when Beau-Lyn was six-months-old. It became really apparent when she got to school age and couldn’t handle a year one class.” 

An initial set of blood tests - taken in 2014 - were not revealing. Six years later, Kimberly was made aware of the 100,000 Genomes Project, a government pilot focusing on rare diseases. 

Beau-Lyn was tested again in January 2020, with those tests revealing DDX3X.

While "relieved" at a conclusive diagnosis, Kimberly is desperate to learn more and has enrolled Beau-Lyn onto a study being conducted by the University of Cambridge.

Dagenham girl has rare genetic condition

Kimberly's youngest daughter London, 2, is also set to be tested for DDX3X this summer. - Credit: Kimberly Fowell

Beau-Lyn currently attends Richard Alibon Primary School in Dagenham after moving there in year 2.

Though she "struggles with every aspect of education", Kimberly feels having Additional Resource Provision (ARP) has been hugely beneficial.

"They’re really good with Beau-Lyn. She has her own work station there and facilities that just aren’t possible in mainstream education. She has come on so much, particularly her speech."

The month of May will see the family raise funds for the Little Princess Trust.

On May 27, Kimberly and Beau-Lyn will each have at least 14 inches of their hair cut off, to be made into wigs for those who have lost their hair due to cancer.

While she plans to raise money for the DDX3X Foundation in the future, Kimberly explained the special reason she chose the Little Princess Trust: "It's because of Beau-Lyn's sensory issues. She doesn’t like her hair being washed, brushed or tied up, so we've been growing it with this in mind."

Brother Upton doing bike ride for The Princess Trust

Beau-Lyn's brother Upton will get in on the fundraising act, and is set to cycle his age in miles - 11 - on May 22. - Credit: Kimberly Fowell

Five days earlier - on May 22 -  Beau-Lyn's brother Upton, 11, will be cycling his age in miles to play his part.

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