The Scotts Fight Against MLD

£29,723 of £35,000 goal

Raised by 747 people in 33 months
Thank you for reading our story and visiting our fundraising page. Friends and family suggested we start this page so they could help us raise the money we will need for our impending journey and fight against the disease that is Metachromatic Luekodystrophy (MLD) To transport our beautiful daughter Paige to Italy when her twin baby brothers start gene therapy treatment next year and to cover our living expenses, accommendation and loss of wages.  We were stunned when Paige was diagnosed with MLD earlier this year after tests to discover why she never progressed to walking unaided. We never ever expected to be told that our bright and bubbly cheeky little girl was suffering with a rare and incurable life limiting brain disorder that would slowly rob her of her ability to do all the things she loved. I was due to give birth to Paige’s twin brothers when we were told that they too might have the same condition. Tests when they were weeks old confirmed our worst fears they too have MLD like Paige. Our consultant at Great Ormond Street has offered us hope for the twins by putting them forward for pioneering gene therapy trial which has so far shown amazing results in children with MLD. But the treatment only works before symptoms start to show so it’s too late to try for Paige. We need to take our twins to Italy for treatment but to leave our gorgeous girl when she needs us too would break our hearts, so her health permitting, we hope to raise enough to travel to Italy as a family and be together while we fight for our gorgeous sons. We will need disabled accommodation for Paige and specialist flights as well as a trained nurse to help with her round the clock care. We are so very grateful for this chance of treatment for our sons but it would mean the world to us to be able to stay together. 






Any funds which are raised will help us so very much at a very difficult time both in terms of making this possible and helping to make Paige as happy and comfortable as we can. She loves Minnie Mouse and we had hoped to take her to Disney when we found out how ill she was but she is now too poorly to go. We also hope to use these funds to make some magical memories for her here while she can still smile and laugh. Her precious smile keeps all of her family positive and we appreciate each and every donation so very very much. 


Love from Leah and Shaun
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The treatment hasn't gone to well for Oscar. He's had alot of serious complications from the chemotherapy. At one point he was in Intensive Care and it was touch and go for 12hrs. Shaun got an emergency flight out to be with us. Paige then recently took a bad turn so I had to fly home urgently leaving the boys in Italy. Our priority now is to get Oscar to Great Ormand Street Hospital. As unless we recieve a miracle he will probably require hospital care for a while. Phelix we hope will finish his treatment in the normal time scale and then come home. All of this means more travel costs more accommodation costs more living exspenses and Shaun to be off work for longer. So we are doing a last push for our fundraising. Thank you for all your support.
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Ryan Redmond
31 months ago
2
2

Sorry I can only give a fiver.im disabled myself and use my money to get away regular to keep me going.other than using ebay to donate 10% of some of my items to a specific charity I don't usually give money to anyone but your story was so touching I couldn't help myself. Have a merry Xmas xx

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Leah Scott
32 months ago
1
1

Thank you so much to everyone that has donated. I keep showing Paige and reading out the comments even if she doesn't understand! Xx

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Erin Jo Paddlefoot
1 month ago

How's it going now? I'm sure it's very difficult. I don't know tog, but I am praying for you. That didn't really help much, I know. The struggle you're family is having is so huge, I hope you are ok.

+ Read More
Carol Ngatia
11 months ago

Hello sorry for what you are going through ,but i can advise the couple to sort a product from Natures way called Complete Phyto-energizer and a beverage called my Choco helps in in Brain development for kids.

+ Read More
Leah Scott
30 months ago

So so overwhelmed by everyones generosity and kind messages. Thank you so much and happy new year to you all xxx

+ Read More
Joann Hansen
31 months ago

I'm so sad to read your story, I will try and send something after the holidays. Your family will be in my prayers daily. May god bless your children and give you the strength to keep fighting for the twins.

+ Read More
Simon Jones
31 months ago

I just want to say this is the same illness my sister had and to hear of not 1 but 3 cases is really heartbreaking. Enjoy everyday you all get together make each day magical and one thing that helped me and my family is one thing children with this illness lose is their smile. Hope you get the money you need and to all your family hope it all goes as well as can be. Have a magical Christmas x

+ Read More
Mandy Law
31 months ago

Can u let me no if u got my donation not sure if I did it rite thx n merry xmas xxx

+ Read More
Nicole Carey
31 months ago

I will be donating tomorrow when i get paid. I just want to say that i have shared your story in hope that my friends/family see it and will be willing to get you to where you need to be and in hope that you can all stay together.. merry christmas to you all

+ Read More
Alyson Maria Cameron
31 months ago

I will be donating some money for Paige on Wednesday when I get paid but I wanted to say that I have shared your story on Facebook and Twitter my heart goes out to you all it takes a lot of strength and courage to make a decision like you have and to have three beautiful children with terminal illnesses must be a nightmare and worrying time. Give all of your children our love and hugs too. Your in my prayers and in my heart. Xxxxx

+ Read More

£29,723 of £35,000 goal

Raised by 747 people in 33 months
Created October 14, 2015
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£500
Anonymous
19 months ago
£5
Anonymous
21 months ago
£500
Anonymous
22 months ago
DL
£25
Dan Law
22 months ago

Hey! It's Sabika here donating from the funds collected from face painting at the Affinity event in Banham. Big love x

Ryan Redmond
31 months ago
2
2

Sorry I can only give a fiver.im disabled myself and use my money to get away regular to keep me going.other than using ebay to donate 10% of some of my items to a specific charity I don't usually give money to anyone but your story was so touching I couldn't help myself. Have a merry Xmas xx

+ Read More
Leah Scott
32 months ago
1
1

Thank you so much to everyone that has donated. I keep showing Paige and reading out the comments even if she doesn't understand! Xx

+ Read More
Erin Jo Paddlefoot
1 month ago

How's it going now? I'm sure it's very difficult. I don't know tog, but I am praying for you. That didn't really help much, I know. The struggle you're family is having is so huge, I hope you are ok.

+ Read More
Carol Ngatia
11 months ago

Hello sorry for what you are going through ,but i can advise the couple to sort a product from Natures way called Complete Phyto-energizer and a beverage called my Choco helps in in Brain development for kids.

+ Read More
Leah Scott
30 months ago

So so overwhelmed by everyones generosity and kind messages. Thank you so much and happy new year to you all xxx

+ Read More
Joann Hansen
31 months ago

I'm so sad to read your story, I will try and send something after the holidays. Your family will be in my prayers daily. May god bless your children and give you the strength to keep fighting for the twins.

+ Read More
Simon Jones
31 months ago

I just want to say this is the same illness my sister had and to hear of not 1 but 3 cases is really heartbreaking. Enjoy everyday you all get together make each day magical and one thing that helped me and my family is one thing children with this illness lose is their smile. Hope you get the money you need and to all your family hope it all goes as well as can be. Have a magical Christmas x

+ Read More
Mandy Law
31 months ago

Can u let me no if u got my donation not sure if I did it rite thx n merry xmas xxx

+ Read More
Nicole Carey
31 months ago

I will be donating tomorrow when i get paid. I just want to say that i have shared your story in hope that my friends/family see it and will be willing to get you to where you need to be and in hope that you can all stay together.. merry christmas to you all

+ Read More
Alyson Maria Cameron
31 months ago

I will be donating some money for Paige on Wednesday when I get paid but I wanted to say that I have shared your story on Facebook and Twitter my heart goes out to you all it takes a lot of strength and courage to make a decision like you have and to have three beautiful children with terminal illnesses must be a nightmare and worrying time. Give all of your children our love and hugs too. Your in my prayers and in my heart. Xxxxx

+ Read More
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