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Millie's page - Finding a cure for FOP

1 team member

Total raised so far £0.00

Target £0.00

Total plus Gift Aid: £0.00

Raised offline: £0.00

Team story

[p][b][span=color: #000000;] [/span][/b][/p][p][span=color: #ff0000;][lt]span style="text-decoration: underline;"[gt][b]FOP FRIENDS [i]of Millie[/i][/b][/span][lt]/span[gt][/p][p][span=color: #000000;] [/span][/p][p][/p][lt]div id="_mcePaste" style="position: absolute; left: -10000px; top: 0px; width: 1px; height: 1px; overflow: hidden;"[gt]Hello my name is Millie I am 5 years old and I live in Framlingham Suffolk. I have a big brother Ethan and a baby sister Esther who I love to play with. I like going to school and playing with my friends, I just have to be more careful and try not to fall or bump myself. Everyone thinks I am a smiley little girl and I am determined to stay that way. I just want to play like all other children. Hopefully one day I won't have to ask mummy why I can't move like other boys and girls, because the researchers will have found a cure for me and my FOP friends.[lt]/div[gt] [lt]div id="_mcePaste" style="position: absolute; left: -10000px; top: 0px; width: 1px; height: 1px; overflow: hidden;"[gt]We got the devastating diagnosis that Millie had FOP back in October 2013 when she was just 3 years old, something I thought we could never deal with. After time and support from FOP friends and the FOP community we do see hope but we need to continue raising awareness and fundraising to find that cure! [lt]/div[gt] [lt]div id="_mcePaste" style="position: absolute; left: -10000px; top: 0px; width: 1px; height: 1px; overflow: hidden;"[gt](Link to Millie's virgin page) [lt]/div[gt] [lt]div id="_mcePaste" style="position: absolute; left: -10000px; top: 0px; width: 1px; height: 1px; overflow: hidden;"[gt]Is that OK for the website? Feel free to suggest any changes you think of[lt]/div[gt] [lt]div id="_mcePaste" style="position: absolute; left: -10000px; top: 0px; width: 1px; height: 1px; overflow: hidden;"[gt]I will send photo / s in a bit[lt]/div[gt][p] Hello my name is Millie I am 6 years old and I live in Framlingham Suffolk. I have a big brother Ethan and a baby sister Esther who I love to play with. I like going to school and playing with my friends, I just have to be more careful and try not to fall or bump myself. Everyone thinks I am a smiley little girl and I am determined to stay that way. I just want to play like all other children. Hopefully one day I won't have to ask mummy why I can't move like other boys and girls, because the researchers will have found a cure for me and my FOP friends.[/p][p]---------------------------------------------[/p][p][/p][p]On 1st October 2013 my beautiful, happy and smiley daughter Millie who was just 3 years old was given the clinical diagnosis of Fibrodysplasia Ossificans Progressiva (FOP) something I thought we could never deal with. After time and support from FOP friends and the FOP community we do see hope but we need to continue raising awareness and fundraising to find that cure! [/p][p][/p][p]FOP is one of the most rarest and most disabling genetic conditions known to medicine, causing bone to form in muscles, tendons, ligaments and other connective tissues. Bridges of extra bone develop across the joints, progressively restricting movement and forming a second skeleton that imprisons the body in bone.[/p][p]FOP progression is variable and unpredictable. One day a person may be able to turn their head or move their arms, the next day they become frozen forever in a locked position. FOP can significantly shorten the life expectancy of sufferers.[/p][p][/p][p]Research is currently being conducted at the University of Oxford and the University of Pennsylvania, School of Medicine. FOP research will not only help find a cure but will also benefit other more common bone-related conditions from discoveries made (fractures, Osteoporosis, hip replacement and other forms of heterotopic ossification that occur in trauma and burn victims)[/p][p][/p][p][i][b]Having to type this about my daughter is just devastating and it makes it all real again. This is a nightmare that is still there every morning, please help Millie and others in finding a cure for this cruel disease. [/b][/i][i][b]We have been overwhelmed with Love and Support and I would like to thank everyone so much - Lorraine, Millie's mum xxx[/b][/i][/p][p][b] [/b][/p][p]Any donations will be quickly processed and passed to the [b]Friends of[/b] [b]Oliver charity[/b] (FOP Friends) where all money raised goes to the Research Team to help find a cure[/p][p]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. We really appreciate all your support and thank you for any donations.[/p]

Share their story

Charity

FOP Friends

FOP Friends

Supporters

29-Nov-2017

Anonymous

Money raised from the Railway Inn quiz night.

£100.00 plus £0.00 Gift Aid

12-Nov-2017

pat and Barry

Good luck with the quiz and hope you raise a lot of money for two very worthy causes

£50.00

20-Jun-2017

Damian Evans via Lorraine Turner

Thank you to Damian Evans and the Railway Inn Framlingham for holding a fab music night (The Big Bang Theory)

£55.00

20-Jun-2017

Today Magazines Via Lorraine Turner

More fundraising from the team, thank you all xx

£40.00

02-Mar-2017

From Tappers Parents via Wendy Rogers

£10.00

13-Dec-2016

Helen

Merry Christmas to all my friends and family. Please accept this message and donation as my families Christmas card to each of you xx

£10.00 plus £2.50 Gift Aid

29-Apr-2016

Lorraine Turner

Instead of gifts for my 40th birthday we had a collection at my party for Millie's fund - thank you everyone X

£160.00

29-Apr-2016

Beverley Chambers via Lorraine

Clothes Swap, Stratford organised by Beverley Chambers - thank you everyone who helped out, donated raffle prizes and attended x

£165.00

29-Apr-2016

Framlingham - Charity Football Match

Charity Football Match, Framlingham organised by Rob and James Rogers, food donated by Fram Railway- thank you to everyone who attended and your amazing generosity for Millie x

£545.00

24-Apr-2016

Helen Clements

Wickham Market U10's and East Bergholt U10's supporting fun feet 23rd April

£30.00

Lorraine Turner

Lorraine Turner