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Olive's Rett Journey

Paul Beaumont is raising money for Reverse Rett
“On going fund raising”

on 1 February 2012

Donations cannot currently be made to this page
Reverse Rett is a patient advocacy and research organisation focused on delivering treatment for Rett Syndrome to all affected. Read more here: reverserett.org.uk For Rett Registry UK: https://www.rettregistry.uk/

Story

<p> <p class="yiv1249199207ecxmsonormal" style="margin-bottom: 16.2pt; background: none repeat scroll 0% 0% white;"><span style="font-family: &amp;quot;Adobe Fangsong Std R&amp;quot;,&amp;quot;serif&amp;quot;; color: #2a2a2a;">Our twins, Olive and Tilda, were born on 20th April 2010. </span><span style="font-family: &amp;quot;MS Mincho&amp;quot;; color: #2a2a2a;">&nbsp;</span><span style="font-family: &amp;quot;Adobe Fangsong Std R&amp;quot;,&amp;quot;serif&amp;quot;; color: #2a2a2a;">They are bright, they are beautiful, and they are the best gifts we could have ever hoped to receive.</span><span style="font-family: &amp;quot;MS Mincho&amp;quot;; color: #2a2a2a;">&nbsp;&nbsp;</span></p> <p class="yiv1249199207ecxmsonormal" style="margin-bottom: 16.2pt; background: none repeat scroll 0% 0% white;"><span style="font-family: &amp;quot;Adobe Fangsong Std R&amp;quot;,&amp;quot;serif&amp;quot;; color: #2a2a2a;">Despite a very difficult birth, and start for Tilda, both girls seemed to be developing perfectly, until just before their first birthday.</span></p> <p class="yiv1249199207ecxmsonormal" style="margin-bottom: 16.2pt; background: none repeat scroll 0% 0% white;"><span style="font-family: &amp;quot;Adobe Fangsong Std R&amp;quot;,&amp;quot;serif&amp;quot;; color: #2a2a2a;">Our first clue something might be wrong was when Olive stopped saying &lsquo;Daddy&rsquo;. </span><span style="font-family: &amp;quot;MS Mincho&amp;quot;; color: #2a2a2a;">&nbsp;</span><span style="font-family: &amp;quot;Adobe Fangsong Std R&amp;quot;,&amp;quot;serif&amp;quot;; color: #2a2a2a;">Then Olive lost other skills.</span><span style="font-family: &amp;quot;MS Mincho&amp;quot;; color: #2a2a2a;">&nbsp;</span><span style="font-family: &amp;quot;Adobe Fangsong Std R&amp;quot;,&amp;quot;serif&amp;quot;; color: #2a2a2a;"> As a parent, you know when something is affecting your child.</span><span style="font-family: &amp;quot;MS Mincho&amp;quot;; color: #2a2a2a;">&nbsp;</span><span style="font-family: &amp;quot;Adobe Fangsong Std R&amp;quot;,&amp;quot;serif&amp;quot;; color: #2a2a2a;"> And as a parent of twins, a change in one child is made even more painfully obvious.</span></p> <p class="yiv1249199207ecxmsonormal" style="margin-bottom: 16.2pt; background: none repeat scroll 0% 0% white;"><span style="font-family: &amp;quot;Adobe Fangsong Std R&amp;quot;,&amp;quot;serif&amp;quot;; color: #2a2a2a;">We contacted the hospital, and after an initial assessment and a subsequent further appointment for blood tests, at 11.15am on Monday 3rd October 2011, six weeks after the very first appointment, Olive was diagnosed with Rett Syndrome.</span></p> <p class="yiv1249199207ecxmsonormal" style="margin-bottom: 16.2pt; background: none repeat scroll 0% 0% white;"><span style="font-family: &amp;quot;Adobe Fangsong Std R&amp;quot;,&amp;quot;serif&amp;quot;; color: #2a2a2a;">When looking up Rett Syndrome when we got home, we read &lsquo;imagine the symptoms of autism, cerebral palsy, Parkinson's, epilepsy, and anxiety disorders.......all in one little girl.&rsquo;</span></p> <p class="yiv1249199207ecxmsonormal" style="margin-bottom: 16.2pt; background: none repeat scroll 0% 0% white;"><span style="font-family: &amp;quot;Adobe Fangsong Std R&amp;quot;,&amp;quot;serif&amp;quot;; color: #2a2a2a;">A tiny mutation to a single gene has condemned Olive to a life of profound disability and total dependence. </span><span style="font-family: &amp;quot;MS Mincho&amp;quot;; color: #2a2a2a;">&nbsp;</span><span style="font-family: &amp;quot;Adobe Fangsong Std R&amp;quot;,&amp;quot;serif&amp;quot;; color: #2a2a2a;">It is without a doubt one of the cruellest diseases out there.</span><span style="font-family: &amp;quot;MS Mincho&amp;quot;; color: #2a2a2a;">&nbsp;</span><span style="font-family: &amp;quot;Adobe Fangsong Std R&amp;quot;,&amp;quot;serif&amp;quot;; color: #2a2a2a;"> Crueller still, things will only get worse from here. With breathing difficulties, feeding problems, acute anxiety, epilepsy, severe spinal curvature, all likely prospects.</span></p> <p class="yiv1249199207ecxmsonormal" style="margin-bottom: 16.2pt; background: none repeat scroll 0% 0% white;"><span style="font-family: &amp;quot;Adobe Fangsong Std R&amp;quot;,&amp;quot;serif&amp;quot;; color: #2a2a2a;">Amazingly there is hope. In 2007 a paper in the Journal 'Science' described an unprecedented achievement: the reversal of Rett symptoms in a mouse model of the disorder.</span></p> <p class="yiv1249199207ecxmsonormal" style="margin-bottom: 16.2pt; background: none repeat scroll 0% 0% white;"><span style="font-family: &amp;quot;Adobe Fangsong Std R&amp;quot;,&amp;quot;serif&amp;quot;; color: #2a2a2a;">Scientists are predicting that Rett Syndrome could become the first curable neurological disorder.</span><span style="font-family: &amp;quot;MS Mincho&amp;quot;; color: #2a2a2a;">&nbsp;&nbsp;</span><span style="font-family: &amp;quot;Adobe Fangsong Std R&amp;quot;,&amp;quot;serif&amp;quot;; color: #2a2a2a;"> We know the faulty gene.</span><span style="font-family: &amp;quot;MS Mincho&amp;quot;; color: #2a2a2a;">&nbsp;</span><span style="font-family: &amp;quot;Adobe Fangsong Std R&amp;quot;,&amp;quot;serif&amp;quot;; color: #2a2a2a;"> Scientists firmly believe they know how to restore the gene to health.</span><span style="font-family: &amp;quot;MS Mincho&amp;quot;; color: #2a2a2a;">&nbsp;</span><span style="font-family: &amp;quot;Adobe Fangsong Std R&amp;quot;,&amp;quot;serif&amp;quot;; color: #2a2a2a;"> There is no brain damage, and so a reversal would give Olive a potentially normal life.</span></p> <p class="yiv1249199207ecxmsonormal" style="margin-bottom: 16.2pt; background: none repeat scroll 0% 0% white;"><span style="font-family: &amp;quot;Adobe Fangsong Std R&amp;quot;,&amp;quot;serif&amp;quot;; color: #2a2a2a;">There is one problem - the funds to support the research are entirely reliant on private donations.</span></p> <p class="yiv1249199207ecxmsonormal" style="margin-bottom: 16.2pt; background: none repeat scroll 0% 0% white;"><span style="font-family: &amp;quot;Adobe Fangsong Std R&amp;quot;,&amp;quot;serif&amp;quot;; color: #2a2a2a;">We're not comfortable asking for money, but a donation from you could go towards giving Olive and the countless thousands of other little girls a chance of a normal life. </span></p> <p class="yiv1249199207ecxmsonormal" style="margin-bottom: 16.2pt; background: none repeat scroll 0% 0% white;"><span style="font-family: &amp;quot;Adobe Fangsong Std R&amp;quot;,&amp;quot;serif&amp;quot;; color: #2a2a2a;">Please give generously.</span></p> <p class="yiv1249199207ecxmsonormal" style="margin-bottom: 16.2pt; background: none repeat scroll 0% 0% white;"><span style="font-family: &amp;quot;MS Mincho&amp;quot;; color: #2a2a2a;">&nbsp;</span><span style="font-family: &amp;quot;Adobe Fangsong Std R&amp;quot;,&amp;quot;serif&amp;quot;;">Paul &amp; Janie</span></p>

Donation summary

Total
£24,389.16
+ £2,747.85 Gift Aid
Online
£24,389.16
Offline
£0.00

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