19Th March 20010.
I'm very proud to tell you all that Sophie has been wearing her back brace for a Month now and is trying to keep in good spirits. She is feeling uncomfortable and very hot but is managing to put up with the discomfort and is wearing her brace for 10 hours every day. We are praying it will help slow dow...n the curve in her spine and push her back surgery, back a year or so. We are back at Great Ormond Street Hospital in August to find out if it has helped at all.
Sophie's group has become very quite and I would like to wake it up again. Any ideas would be most welcome.Sophie truly enjoys receiving the messages you leave so thank you.
As we can be adding new friends all the time to our friends list I would like to remind you to invite them to Sophie's group. Never know who's out there who may be able to help. Lets get the group growing again for " Our Sunshine Sophie".
We would like to be holding Fundraising events no matter how big our small. I do understand that as we are not a registered charity this can be hard, so maybe holding fundraising events for a charity and Sophie's group and split the proceeds.
Sophie's Grandad Colin has a confirmed place and will be running "The Great North Run" on be half of Sophie's fund and Rainbows Children's Hospice Registered Charity Number: 1014051.
Sophie use the hospice for rest-bite care. The staff do a amazing job through some very tough times.
We really need help with sponsorship. Can you collect sponsors around you neighbourhood, work,pub? You can help make a difference to Sophie and the other hundreds of children who attend Rainbows Hospice.
If you would like to Sponsor Colin please contact myself for more info. Many Thanks for your support.
Proud supporter of the Sophie Godber trust
www.sophiegodbertrust.com The Sophie Godber Trust Fund is not a registered charity, but a very good cause.
Today was Sophie's Six month appointment at QMC Nottingham. Sadly we received the news that Sophie's Scoliosis has got worse and faster than the Dr's had thought.Sophie's curve in her back in now at 36 degrees. There has been a 14 degree increase in 8 months! They are looking at operating soon by placing metal rods on to her spine to straighten her back.
This Operation can not be taken lightly as because of Sophie's condition the Anesthetic cause a big risk. The Dr's feel that the Op will stop Sophie from walking and would become full wheelchair dependent. We new eventually Sophie's condition would stop her from walking we didn't expect Sophie to need this Op before that had happened.
So at the moment she is a very frightened little girl who feels very scared at the fought of having to face such a big thing. My brave little Girl. Love you so much and myself and Daddy will be holding you hands always angel xx
The Ticket is Valid for entry on: Sunday 5th July 2009.
It Permits Free entry for a vehicle & up to 5 persons.
Gates open at 0800 and will be closing at 1930
All money raised from tthis sale will go to Sophie's Fund.
Here is the link for you all to take a look. Please pass the word on about our sunshine Sophie.
Best Wishes
Sarah ( Sophies Mummy)
DATED 6TH MARCH 2009
Hi Friends,
Sophie has been in really bad pain over night and was unable to attend school this morning. Due to pains in her lower back and hip she is finding it so hard to get comfortable.
We really need to raise the funds for the Specialist seating system ASAP.
Sponsor forms are now complete for the Big bike Challenge this May.
So far we have had 1 sponsor ( Manny thanks Ro).
Please support us with a sponsor whether it be Penny's or Pounds. You really can help make a difference for little Sophie.
Please contact myself through face book or at [email protected].uk
to add your sponsor.
Many Thanks.
SOPHIE'S STORY IN THE WORDS OF SARAH GODBER
Sophie is our wonderful daughter who has an extremely rare genetic condition called " Congenital Muscular dystrophy Merison Deficient." (CMD). This is a life limiting, muscle wasting condition. It means she has a low muscle tone, which makes her very floppy and she has to spend most of her time in a wheelchair.
She will lose her ability to walk as she grows older and heavier, as her muscles are unable to cope with a greater strain. Sophie has already had serious falls resulting in broken bones due to this weakness.
This condition also affects her respiratory muscles and in the future she may need to rely on oxygen ventilator for support It can also effect her heart, as it will find it harder to beat as the muscles weaken
Sophie also suffers from Scoliosis which is a unnatural curve in the spine. In CMD Scoliosis develops because the weakened spinal muscles are unable to support the spinal column. Because of this Sophie is facing Major Spinal Surgery.
At present there are no cures or treatments.The doctors don't know how long we will have our beautiful daughter in our lives.
Because of this we want to give the very best to Sophie and make sure every day counts.. We have set up a personal Fund for Sophie we are not a registered charity, but a very good cause. Our aim is to raise funds to pay for life enhancing equipment, activities and adaptive clothing.
Sophie is now 8 years old. She is still walking with the aid of her splints but has many falls which have led to broken bones. She mostly uses her power chair. She cannot climb stairs or run, and cannot get up off the floor when she falls. Sophie is struggling a lot physically and emotional. She is waiting to receive 1to1 therapy to help her come to terms with her devastating condition. She is starting to ask a lot of questions, but despite all she goes through, Sophie is a bubbly little girl with an infectious energy. She is very warm and giving. She loves Disney Princesses, mermaids and fairies. She is a typical 8 year old girl whose body can not keep up with her.
We are extremely proud of Sophie and all she achieves. We love her so very deeply. But all Sophie longs for is to be (in her words) “a real girl” who can hop, jump, run and especially walk without her wobbly gait.
We are holding some events to raise funds for little Sophie. But always looking for ideas or people who can help us.
UP AND COMING EVENTS TO HELP SOPHIE
We are holding a medium night in honour of Sophie.
Hosted by Leanda Sullivan.
There will be 5 mediums attending and this is a tickets only please.
They are on sale for £10 each, and will be on sale from the 10Th march.
All funds raised will Contribute to a Special seating system for Sophie, which we hope will ease her cramps.
For more information or to get your ticket please contact
[email protected]
CONTACT DETAILS ON HOW TO HELP
Four young adults from Lincoln are taking on a big challenge this May. align=center>Cheryl Colson, Ben Irons, David Waller and Anthony Middleton will be jumping on there bikes to help raise funds for Sophie. Plans are To Cycle from Lincoln to Skegness. The starting line will be Lincoln Cathedral and the finish will be Skegness pier. This adventure will take place Saturday 16th May. Starting line 9.00am at Lincoln Catherdral. This is over a 41 mile journey, but all want to do this for Sophie! They are hoping to finish the route in 4-5 hours. We wish you the best of luck!
If you would like to sponsor this group you can do by contacting [email protected] Thank You.
You can read Sophie's full story at her website www.sophiegodbertrust.com Please support our quest to give Sophie the life she deserves.
