Amber-Rose

We are currently trying to raise funds for a beautiful little girl Amber-Rose, Amber will be 3 in November & currently suffers from Central Apnea this is when the brain stops sending signals to breathe!  As a result of this Amber relies on Oxygen when she is in bed, & requires oxygen tanks to be carried when she leaves the family home.

Amber-Rose also suffers from seizures which is currently being investigated by the London Hospital as it is not related to epilepsy, she has had an abnormal MRI scan which shows that the brain has delayed myelination, as Amber-Rose has very lax ligaments & low muscle tone it is a struggle for her to move around, however recently she has shown great determination to pull herself up against the sofa where she can now stand smiling.  Unfortunately Amber-rose is unable to speak.

Amber-Rose has a deletion of the long arm on chromosome 17.  Guys hospitals genetics don’t believe this to be the cause of her disabilities, as two population studies have show this deletion also having no significant effects on people.  There could possibly be movement disorder that they are looking into as well, the London specialist think there maybe something wrong with the central part of her brain.

After a recent CT scan there were signs of lung damage which they believe has been caused by her aspirating reflux.

Having recently returned from London where Amber-Rose had a video Fluoroscopy to look at her swallowing, due to coughing fits, her drinks are now having to be made thicker to help be swallowed.

Despite Amber-Rose suffering all of the above she is a very happy loving social little girl who loves her big brother Jackson very much, she has a very loving Mum & Dad who adore her, Amber-Rose loves nothing more than cuddling her 2 Cats.

We will be raising Funds for Amber-Rose & her family to hopefully landscape & tidy the back garden (Photo below) of their family home.

Currently there is a 2ft drop from the lounge doors to the back garden.  We would like to raise enough funds to allow the garden to be professionally landscaped, have a decking area put in place for all the family to enjoy some outside living space (Currently they are confined to their home on a beautiful sunny day) & allow the children to sit on some grass enjoying the various species of birds & butterflies.  We would also like to be in a position where we can purchase some special play equipment for Amber-Rose & her Brother Jackson.

The view above is looking at the rear of the Family Home

Above is the Family Garden looking from the rear of the House.

 

Above the Family garden which is unsafe for Amber-Rose & Jackson.

We would like to thank local Architect Andrew Gerken from Pump House Design based in Sedlescombe, East Sussex.  Andrew has given his time to provide the family of Amber-Rose Sims the drawing for the planning application of the family deck area. 

Pump House Designs

Set in the picturesque village of Sedlescombe in East Sussex, Pump House Designs offer a comprehensive service.

We are able to guide you through the complicated planning and building regulations systems and provide you with plans for all of your planning and building regulatEast at the Local Authority Building Control Award 2010 and have recently had one of our projects featured in Build It and Home Improvement Magazine.
We have also been involved with projects for The Hop Farm at Paddock Wood, Yesterdays World in Battle and were pleased to design the recently constructed Pavilion for Sedlescombe Parish Council.

If you would like a FREE Inital Consultation & FREE advice with your project please contact Andrew Gerken on 01424 871120 or click on the following link. www.pumphousedesigns.co.uk

At the begining of Decemebr 2011 we gained planning permission to errect the Decking area at the rear of Amber-Rose Sims house.  Wednesday 14th December 2011 saw Mr. Chris Mepham & Gary Henderson plus there team from the Hastings Fire Service attack the Family Garden.

After spending the morning clearing the garden Chris, Gary (AKA Wendy) & the Team started to get to grips with the Framework, quickly you could see what a difference a dedicated team can do!

The evening of the 14th saw the Fire Team return to Night Watch Duties, during the evening the Hastings Fire Service was called out to a horrendous fire this left the Brigade with very little sleep, however not wanting to let Amber-Rose & her Family down Chris & the guy’s continued with the Decking.

After making such great progress on Thursday, Friday 16th hit the team with almost all weather conditions, we had strong winds, sleet, snow, rain & in the afternoon a bit of sunshine.  Chris, Billy, Jamie & Gary from the Fire Service along with Paul Harris & Carl Denne (From Charity for Kids) continued with the Decking to make it safe & secure the Sims Family.

 Above Left, Gary (AKA Wendy) Centre Billy, Right Paul Harris (Charity for Kids) 

Above Cutting Chris Mepham, watching Carl Denne (Charity for Kids) 

 

The Garden is now taking place with all thanks going to Hastings Fire Service, without there help we would not be where we are now!!

Amber-Rose & her Brother Jackso are already using the Decking!

Below is Amber-Rose enjoying the Snow in February 2012

Once the snow cleared Chris and the Team came back to get the Garden ready for the Turf.

If you would like to contact Chris Mepham & his team for a quote on any building work please phone 07932 746373   

Thank you again!!

Alongside helping Amber-Rose we have Fund Raised to get to £5k as we are desperate to become a registered charity.  Now we have hit this amount we are keen to keep going & raise even more Funds!  Our next figure is £10,000.00 the more we raise the more Children/Families we can help!

Bank Details:

Barclays Bank
Sort Code: 20-27-91
Account Number:83094537

Please make cheques out to: Charity for Kids (Send to 31 Park Way, Hastings, East Sussex, TN34 2PH).