Rachel &Brooke

£16,272 of £20,000 goal

Raised by 731 people in 11 months
My daughter Rachel who is 33 has inherited a rare form of aggressive dementia called Gerstmann–Sträussler–Scheinker syndrome.
Rachel was fully diagnosed at the end of 2017,there is no treatment and most unfortunately no cure.
This condition is extremely rare especially in young people.
She has an 8yr old daughter and is a single parent living alone in Chesterfield.
 Her mother also has this condition,she is currently receiving palative care.
I am trying to raise funds to give both Rachel and her daughter a holiday to remember in Disney Land Florida .
Rachels condition is deteriating at an alarming rate with loss of both mobility and memory. 
Rachel was a childcare nurse  for many years before she tragically became ill.
Funds are needed urgently so that they can both have fun times together before the eneviatable happens.

As a family we have had and continue to have tough emotional times since her diagnosis, and with the daunting prospect of even more to come we are determined to make every day as happy and joyful as possible for both of them.31952474_153363919832210_r.jpeg

A holiday in Disneyland would give Rachel and Brooke some wonderful everlasting memories.

Please help if you can.

Thankyou for your love and support in these difficult times.

Kevin & Melanie Potter
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Tomorrow I shall be filming a follow up interview with BBC Look North, discussing the fantastic memory making trip to Florida and how both Rachel and Brooke are settling into their specially adapted home.
It should be ready for broadcast in a few days time.
Thanks to Olivia Richwald of BBC for organising this.
Boshika Gupta a renowned journalist from Oman has also written a magazine article on my girls within her research of young people and the issues surrounding neurological diseases.
Here’s the link to that particular article
http://reset fest.com/dementia-doesnt-always-strike-the-elderly/

Rachel and Brooke have a brand new bright blue mobility car now which will I’m sure enhance their lives considerably,Brooke got to choose the colour blue although we were convinced she would have chosen pink as that’s the colour scheme of her new bedroom.
1st and 2nd of June we go to the Warner Brothers Studio in London for the Harry Potter Studio Tour,the girls are really looking forward to that !
A massive thanks to the willow foundation who have organised this for us.
On every update we like to thank all our generous donators and of course our friends and family.
All you wonderful people out there we can never thankyou enough, without your generosity, love and kindness none of this would have been possible.
A special thanks goes out today to all those individuals who have supported me during these recent difficult times.
As before if you know someone who wishes to donate please point them in this direction.
Much love to one and all, until the next time.....xx❤️xx
Kevin and Melanie Potter.
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Hello all you wonderful donators.
Fresh from 2 glorious weeks in Disneyland,Rachel and Brooke made so many lasting memories,despite problems in immigration and transport issues we had a most wonderful time,and that’s all down to you wonderful people who donated and helped raise the funds required.
We have another trip for Rachel and Brooke at the beginning of June when we take them to The Warner Brothers Harry Potter Studios In London,many thanks to the Willow Foundation who have made this possible.
They have moved into their adapted council property and are settling in nicely, we are collecting a mobility vehicle next week which will enhance their quality of life.
A new care team has taken over, Rachel is now having 24/7 overnight care.
Medically Rachel has deteriorated with her mobility and short term memory capability but thankfully not as much or as fast as we had feared.
Still having battles with the authorities but our resilience and determination will see us through.
Now the Disneyland trip has been completed the funds remaining will be used to enhance Rachel and Brooke’s quality of life, setting up a trust fund for Brooke, and of course planning for all eventualities in respect of Rachels condition.
According to the specialists Rachel has had this condition for approximately 3 years with an average prognosis time scale of 5 years.
An article explaining Rachels condition will be published in a health magazine in the Middle East very soon.
Donations are still coming in and more fund raisers are planned for later this year.
BBC Look North will be filming a follow up post Disneyland in the next 6 weeks or so.
So time is short and we will continue to raise funds for as long as possible.
If you know someone who hasn’t seen this fund raising campaign and would like to donate then please point them in the right direction.
Many many thanks...making Memories continues.
Much Love Kevin & Melanie Potter.❤️
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6 months now since we started fundraising,donations and kind offers are still coming in for Rachel and Brooke.
Sometime in May they will be going to Harry Potter studios in London,many thanks to the willow foundation for this wonderful gift.
Thanks to Ashgate Hospice,Rachel has recorded an oral history of herself to be included in Brookes memory box.
There are further fundraisers in the planning stages for later on this year.
Hopefully they will be moving into their specially adapted house near to Brookes school very soon.
Rachel now has a fantastic care team who have lifted her spirits and have improved Rachels quality of life immensely,they are planning lots of outings and activities for both Rachel and Brooke.
Less than 9 weeks before we go to Disneyland Florida !
None of this would have been possible without the kindness of all who have donated and raised funds for our Daughter and Grandaughter.
We remain extremely humbled by the love and affection and generosity shown by so many.
Rachel and Brooke’s Journey continues. ❤️
Thankyou one and all
Kev & Melanie Potter xxxxxx
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Hello. After 4 month's of fundraising the total stands at nearly £23.000. I would like to thank all of the donators and fundraisers for all the hard work kindness and generocity shown. Rachel and Brooke had a lovely Christmas with family. 6th April is fast approaching when we can make some beautiful memories for Rachel and Brooke. Today is Rachel's 34th birthday she's had a lovely time. Next Wednesday is the funeral of her mum June who sadly passed away just before Christmas having bravely struggled with this horrific desease for the last 8 years. It will be a difficult time for all. An adapted property has been sourced by Rachel's local Council and hopefully both Rachel and Brooke will be moving in around February once all the adaptations have been completed. Rachel will be having 24/7 care starting in the next few weeks. The fundraising will continue for as long as possible. I hope you all had a peaceful Christmas and happy new year. Until the next time. Love to you all. Kevin & Melanie Potter.xxxxx
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£16,272 of £20,000 goal

Raised by 731 people in 11 months
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