Appeal to help brave Jack cope with rare syndrome

March 01 2020

Parents Abby and Josh Anderson-Jones and children Jack and Mya, with Robin Eveleigh, of Eveleighs estate agents, who are contributing to the appeal to give Jack a sensory room

Parents Abby and Josh Anderson-Jones and children Jack and Mya, with Robin Eveleigh, of Eveleighs estate agents, who are contributing to the appeal to give Jack a sensory room 

AN APPEAL has been launched to help provide a sensory room for a boy in Saltford who has a rare syndrome.
Jack Anderson-Jones is a lively and loveable three-year-old. However, he has a genetic disorder called Cornelia De Lange Syndrome (CDLS), which poses a range of physical, cognitive and medical challenges in his daily life.
These include gastro reflux issues that have seen Jack hospitalised multiple times.
His parents Abby and Josh said: “CDLS is rare, and little is known about this unforgiving syndrome.
“Jack has delayed development, and we still have no understanding of how it has impacted him. He currently cannot speak or walk independently. Inherent with the syndrome comes the vast array of health issues that he is likely to face in the future.
“Jack is a lovely, caring little boy, and although he has his struggles, he has the biggest of hearts and is loved by everyone - none more so than by his big sister Mya, who is aged seven.
“Mya is a bright and outgoing little girl who has seen Jack at his lowest times. She really hates seeing her little brother in distress, or when he has to go into hospital. Mya loves her little brother and is very protective of him.”
With the money raised, the couple aim to make a sensory/therapy room at home for Jack. This will include soft flooring, calm lighting, a projector, mirrors and sensory toys.
“When Jack is unwell due to refluxing or bowel issues, this can result in him losing all mobility. We are trying to make a completely safe, calm and comfortable room especially equipped for him and his needs.”
Among those supporting the appeal are Eveleighs estate agents in Keynsham. As well as giving £250 towards the sensory room, they plan to donate £50 (TBC) from the sale of each property they are instructed to sell during March (subject to completion).  
So far, a GoFundMe page called ‘For a brave little trooper’ has raised £880 towards its £1,000 target.
The fundraisers include the couple’s friends Naomi Pattinson and Troy Purslowe, from Tenby, who will be raising money for Jack this summer by competing in the Cotswold Triahtlon.
“Everyone’s support means the world to us - thank you on the behalf of our little trooper Jack.”
To view the GoFundMe page, please visit https://www.gofundme.com/f/for-a-brave-little-trooper
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Parents Abby and Josh Anderson-Jones and children Jack and Mya, with Robin Eveleigh, of Eveleighs estate agents, who are contributing to the appeal to help provide Jack with a sensory room

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rare, and little is known about this unforgiving syndrome.
“Jack has delayed development, and we still have no understanding of how it has impacted him.
“He currently cannot speak or walk independently. Inherent with the syndrome comes the vast array of health issues that he is likely to face in the future.
“Jack is a lovely, caring little boy, and although he has his struggles, he has the biggest of hearts and is loved by everyone - none more so than by his big sister Mya, who is aged seven.
“Mya is a bright and outgoing little girl who has seen Jack at his lowest times. She really hates seeing her little brother in distress, or when he has to go into hospital. Mya loves her little brother and is very protective of him.”
With the money raised, the couple aim to make a sensory/therapy room at home for Jack. This will include soft flooring, calm lighting, a projector, mirrors and sensory toys.
“When Jack is unwell due to refluxing or bowel issues, this can result in him losing all mobility. We are trying to make a completely safe, calm and comfortable room especially equipped for him and his needs.”
Among those supporting the appeal are Eveleighs estate agents in Keynsham. As well as giving £250 towards the sensory room, they plan to donate £50 for each new property listing in March whose sale is successfully completed.  
So far, a GoFundMe page called ‘For a brave little trooper’ has raised more than £1,000 for the sensory room.
The fundraisers include the couple’s friends Naomi Pattinson and Troy Purslowe, from Tenby, who will be raising money for Jack this summer by competing in the Cotswold Triathlon.
“Everyone’s support means the world to us - thank you on the behalf of our little trooper Jack.”
To view the GoFundMe page, please visit https://www.gofundme.com/f/for-a-brave-little-trooper