Charity
SOFT UK provides information & support for those affected by trisomy 13 or trisomy 18, (Patau's and Edwards' syndromes), and related disorders. We help parents when they are given a prenatal diagnosis and after any decision they might make as to whether they choose to have a termination or decide to continue the pregnancy. We support those caring for a baby or child with these conditions, and families if a bereavement occurs. SOFT UK publishes booklets about these syndromes, and provides telephone support, links to others and shared experiences through newsletters and annual SOFT Days. We welcome enquiries from doctors, nursing staff and students. Visit our website for online information booklets, data about these conditions, photographs of babies and children, and our new SOFT Stars Remembrance page.
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Running for Imogen
Hi just to let you know on the 11th September I completed the Robin Hood Half Marathon in 2 hours 46 minutes depsite the dodgy knees and the nose bleed at 10 miles, it may have been a bit of a dad run at the end but I did it - I would like to give a massive thank you to all of the people who have sponsored me and all of the people who supported me through the training which started in April. It has been a pleasure to help raise some money for such a worthwhile cause, and in memory of such a little fighter, baby Imogen.
Thanks again
Julie x
Hi, thanks for visiting my page.
My name is Julie and I want to tell you about baby Imogen. When we heard that close friends Isabel and Rick were expecting their second child everyone was so happy for them. Then on a routine scan it was seen that something was not quite right; the baby was a girl but it was suspected she had Patau's Syndrome, a type of chromosomal abnormality which greatly impedes the quality of life a person will have and results in severe physical and mental disabilities. Consequently Isabel was sent for further tests and a few days before Christmas 2010, their worst fear was confirmed. As parents they were given an extremely difficult choice to make. Isabel chose to carry on with the pregnancy and consequently Imogen was named. She is due to be born late April and no matter what, she will be born into a family that have already grown to love her very much. Please revisit my page as I will keep you updated on how Imogen is doing.
The charity that support babies and their families affected by this syndrome is SOFT UK. It is a small UK based charity set up to help those affected, and their families, by Trisomy 13 (Patau's Syndrome) and Trisomy 18 (Edwards' Syndrome). (hover over the SOFTuk icon on the left for details more in depth details).
I urge you to take some time to read some other families stories on the SOFTuk website. I defy any of you to read them without a tear being shed or a heartstring being pulled.
So what am I going to do to try and raise some money?? The Robin Hood half marathon!! It’s been 16 years since my last half marathon and after throwing my trainers in the bin after crossing the finishing line then never even thought about running again. At 47 I thought I was well past doing anything like that; but having “met” Imogen through her scan pictures, and read the stories decided that there was no option but to pull on my trainers and try and raise some money for SOFTuk.
PROGRESS UPDATE -
IMOGEN SHOULER WAS BORN ON 3RD MAY 2011.
I WILL UPDATE YOU ON HER PROGRESS.
A message from Isobel and Rick - 3rd May
"Baby Imogen was born Tues 3rd May @ 8.24am weighing 5lb 3oz. She has shown a lot of fighting spirit and courage however it's anticipated her time with us will be very short. We are praying her time on earth is as peaceful as possible xxx"
Progress Update 4th May
Imogen update: sadly we've now moved to childrens hospice for care until she passes. Christening on Sunday is cancelled. Thanks for all your kind words of support xxx
Progress Update 5th May
Imogen update: a much better day :o) finally proved she can wee so allowed milk again after 24 hours without fluid. Met her big brother and had her picture taken by professional photographer X
Progress Update 6th May
Imogen has had her breakfast and gone back to sleep
Another day over another night of praying for a miracle. Please God let her be with us in the morning xxx
Progress Update 7th May
Thank you for all your prayers. She survived the night. Xxx
Progress Update 8th May
A MASSIVE BIG HEARTFELT THANKS TO RICHARD AND JAMES HUNT OF 21C MOBILE SOLUTIONS BASED IN ILKESTON, FOR THE WONDERFUL DONATION OF £1,000 - ON BEHALF OF SOFTuk AND IMOGEN'S FAMILY I CAN'T THANK YOU ENOUGH!
Through Virgin Money Giving, you can sponsor me and donations will be quickly processed and passed to charities. Virgin Money Giving is a not for profit organisation and will claim gift aid on a charity's behalf where the donor is eligible for this. I, Imogen’s family and SOFTuk all would like to thank you from the bottom of our hearts for any donations you can give.
Recent donors
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Jane Guilor £10.00 (+ £2.50 giftaid) 21.09.11 Well done Julie. Jane and Andy. x x x |
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Jane Evans £25.00 (+ £6.25 giftaid) 13.09.11 Well done Julie - hope the legs feel better soon |
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Vet-medic £50.00 12.09.11 Well done from all Vet-medic |
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Robert McDonald £25.00 (+ £6.25 giftaid) 12.09.11 Well done |
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James Reeve £10.00 (+ £2.50 giftaid) 10.09.11 |
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Ashley Carter £10.00 (+ £2.50 giftaid) 10.09.11 Good Luck tomorrow Julie, sorry this is so late been meaning to donate for ages! Hopefully see you soon Ash x |
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Linda F £10.00 (+ £2.50 giftaid) 10.09.11 Best wishes - thinking of you xxx |
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Silv £10.00 (+ £2.50 giftaid) 10.09.11 Good luck x |
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Martin Barlow £10.00 (+ £2.50 giftaid) 10.09.11 Good luck! |
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Mat Ray £10.00 (+ £2.50 giftaid) 09.09.11 best of luck and well done x |
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Alison Cawdell £20.00 (+ £5.00 giftaid) 08.09.11 Good luck for Sunday Julie! |
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Andrew B £100.00 (+ £25.00 giftaid) 08.09.11 Which out for those blisters... |
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Isabel Shouler £25.00 (+ £6.25 giftaid) 07.09.11 Julie your support throughout this time has been amazing. You are an inspiration to many and I know Imogen will be running alongside you. Thank you Izzy, Rick and Sam xxx |
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Tanya Parkin £5.00 (+ £1.25 giftaid) 06.09.11 Good Luck Julie! Very worthwhile cause x |
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Rachel Milner £30.00 (+ £7.50 giftaid) 06.09.11 I know you can do this Jools. One special little lady will be watching every step you take!!!! And I will be waiting at the finishing line for you. Im very proud of you!!! x |
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Anonymous £10.00 (+ £2.50 giftaid) 04.09.11 |
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Anonymous £10.00 (+ £2.50 giftaid) 01.09.11 |
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Claire Rollinson £20.00 (+ £5.00 giftaid) 29.08.11 Not long to go now! Wishing you good luck on the day - not that you'll need it. You've done amazing and you should be very proud of yourself. A very special little girl will be looking down on you too. Lots of love xxx |
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leanne smith £10.00 (+ £2.50 giftaid) 04.08.11 good luck julie :) x |
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Chris & Kev £10.00 (+ £2.50 giftaid) 20.07.11 All the best Julie, you can do it, brings back memories. xx |
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Anonymous £50.00 (+ £12.50 giftaid) 12.06.11 |
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Anonymous £2.00 (+ £0.50 giftaid) 06.06.11 |
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Sal, Poppy, Ellie & Lottie xxxx £5.00 (+ £1.25 giftaid) 03.06.11 Good luck! |
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Kat £15.00 (+ £3.75 giftaid) 26.05.11 It's brilliant that you have decied to do this. It is really uplifting and I hope all the sponsors and the image of Imogens cute little face will spur you on. I've no doubt you do it no probs! |
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Izzy Wilkie £10.00 (+ £2.50 giftaid) 11.05.11 This is such a heart breaking story Julie, a seriously worthwile cause. All the hard work will be well worth it in the end =) xxx |
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Lisa £20.00 (+ £5.00 giftaid) 11.05.11 Words just arent enough. Thinking of Imogen and her strong family at this awful time. A beautiful little angel. Julie the reason you are running this will be more than enough to get you round, good luck with the run and sincere wishes to the family x |
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Judith £20.00 (+ £5.00 giftaid) 11.05.11 Best of luck Julie. God bless Imogen |
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Richard Jarrett £50.00 (+ £12.50 giftaid) 09.05.11 Dont forget to take plasters for the blisters! Good luck for such a good cause. |
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Leanne Macdonald £10.00 (+ £2.50 giftaid) 09.05.11 |
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Karen Buckley £20.00 (+ £5.00 giftaid) 08.05.11 Such a worthwhile cause xx |
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Sarah Kujawinski £5.00 (+ £1.25 giftaid) 08.05.11 |
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Dawn Warsop £5.00 (+ £1.25 giftaid) 05.05.11 Good Luck Julie |
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Ally Grainger £5.00 (+ £1.25 giftaid) 05.05.11 Good luck on the run! A very worthy cause x |
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Carole Colliver £10.00 (+ £2.50 giftaid) 04.05.11 |
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Viv Belcher £10.00 (+ £2.50 giftaid) 03.05.11 Good Luck Julie great cause |
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Mandi Hale £10.00 (+ £2.50 giftaid) 03.05.11 Hope you raise loads!!! |
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Elaine £10.00 (+ £2.50 giftaid) 03.05.11 Wishing you every success in your fundraising and race Ju, I know you will achieve your goals in both. Also, my very best wishes to Isabel, Rick and of course Imogen |
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Sharon Lewis £10.00 (+ £2.50 giftaid) 03.05.11 |
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Bev £10.00 (+ £2.50 giftaid) 16.04.11 Well done Julie, your a star! :) xx |
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Andy and Vanessa £10.00 (+ £2.50 giftaid) 16.04.11 Well done for taking up the challenge Julie for such a worthy cause. Very best of luck and hope you reach your target. Love Andy & Vanessa xx |
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Liam King £50.00 15.04.11 Good Luck Julie! from Liam at Cegedim Rx |
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Lorraine Blackshaw £10.00 (+ £2.50 giftaid) 11.04.11 |
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Tina £10.00 (+ £2.50 giftaid) 11.04.11 |
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Keeley & Russ £10.00 (+ £2.50 giftaid) 11.04.11 Good Luck Julie!! You will be fine, done it before, age has nothing to do with it. Keep training HARD!! :) xx |
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Shelley and Paul £10.00 (+ £2.50 giftaid) 09.04.11 Good for you Julie, your at your peak anyway!! Ill be thinking of you xx |
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Helen Ben-Fredj £5.00 (+ £1.25 giftaid) 08.04.11 |
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Becky and Sam £10.00 08.04.11 |
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Tony Brown £20.00 (+ £5.00 giftaid) 08.04.11 Great stuff... I can get you the song from the end of the Benny Hill show if that'll help you run faster.... |
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Simon Phillips £20.00 (+ £5.00 giftaid) 08.04.11 Hi Julie Well done - nice to see poeple doing things for others. Hope your feet survive! Simon x |
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Ben £20.00 (+ £5.00 giftaid) 08.04.11 Good luck mutter, great cause. You can do it |
