Welcome
Jordan’s story
Jasmine’s story

About Battens Disease
Research
Jordan in the media
Fund-raising events
About the Trust
How to donate
Contact us
Photo gallery
Related links
Registered charity no: 1098918
 

Jasmine’s Story

On the 1st of December 2003 we had the devastating news that Jordan’s baby sister Jasmine also has the faulty gene.

Unlike Jordan, Jasmine, who was diagnosed shortly before her second birthday, has plenty to say and seems quite advanced for her age which we all foolishly believed to be a good sign. Perhaps we had also wanted to believe that with a 75% chance of her not having the disease, life would not be that cruel - how wrong we were.

At the beginning of 2004 Jasmine is not showing any signs of the disease. She is a delightful little girl, full of life and fun. She is a great little helper around the house and takes great pride in looking after her big brother. She makes funny noises to make him laugh, she holds his hand and wipes his tears when he is upset.

It breaks our hearts to know that Jasmine will suffer from this cruel disease as well. We had so needed Jasmine to be OK, she was our little ray of sunshine she made us strong when we were sad and worried about Jordan.

We are delighted to report that on the 25th of October 2005 Jasmine took part in the gene therapy trial at Cornellís University in New York, where she underwent 8 hours of delicate brain surgery. The operation went without complications and she amazed everyone with her speedy recovery.

As this treatment is pioneering and very much in its infancy, (Jasmine is the youngest child to have taken part in the trial and apart from speech delay she appears a normal little girl) it will be many months or even years before we know how well the treatment works.

Jasmine partaking in the trial has been garnering news coverage in many places, including daily bulletins and features on Channel 5 News, The Standard, BBC on-line, among many others.

If you would like to read the update from BBC on-line please follow this link:
http://news.bbc.co.uk/1/hi/england/london/4379162.stm

For latest on the Gene Therapy trial, please see the Research section.

At the age of 6, Jasmine has sadly deteriorated although at a much slower pace than Jordan did. She is no longer able to walk independently and her balance and fine motor skills are poor. She is still a very happy and cheeky little girl. She attends mainstream school with a support teacher and loves being around her friends. We are desperately trying to keep Jasmine as she is and in March 2007 and again in February 2008 we travelled to China where she is taking part in a Stem Cell Trial at the General Navy Hospital in Beijing. For more information on the Stem Cell Treatment in China, please see the research section.

Jasmine

Jasmine summer 2008

Jasmine

Jasmine summer 2008

Jasmine

Jasmine summer 2008

Jasmine

Jasmine summer 2008

In March 2010, Jasmine turned 8. Sadly, she is now very disabled by the effects of Battens disease: she is no longer able to walk, talk or feed herself (just before her 7th birthday she had a feeding tube fitted), but remains fairly healthy all things considered and thankfully she has been seizure-free for quite some time, obviously with the help of anti-convulsion drugs and she is also on the Ketogenic diet which seems to help.

Jasmine did go to Beijing for a third Stem Cell Treatment in November 2008, but she did not make a good recovery after this last surgery. Instead of seeing improvements as we had hoped for we actually made her worse and it took four weeks in hospital back in London to get her stable with the help of the brilliant doctors and staff at Evelina Children’s hospital.

Jasmine in Evelina

Jasmine in Evelina December 2008

At the end of 2009, we decided that Jasmine’s educational needs would be better met at a special needs school. Fortunately, we know Cherry Garden school and the very caring staff well from Jordanís time there but it was still with a great deal of sadness we said goodbye to her great friends and loving support staff at Alfred Salter Primary School. Luckily, Jasmine has been able to maintain a link to Alfred Salter and once a week she is back there to join her friends for music sessions.

Jasmine in Alfred Salter Primary school

Jasmine in Alfred Salter Primary school

Jasmine in Alfred Salter Primary school

Jasmine in Alfred Salter Primary school

Jasmine in Cherry Garden

Jasmine in Cherry Garden

For the majority of the time, Jasmine is comfortable and content. She still has a beautiful smile, and we try to give her the best care we can and have been very lucky with her schools and all the health professionals involved with Jasmineís care.

Although there is no cure in sight in the immediate future, Jasmine has benefited from medical advances to treat some of the symptoms of Battens disease, such as Botox injections to submandibular glands which means she has hardly any secretions to struggle with and, of course, we still hope for some breakthrough that would really make a difference to the life expectancy and the quality of Jasmine’s life and other children who suffer from LINCL. Please see research section for updates on Stem Cell treatment and Gene Therapy.

Jasmine, William and Poppy, Summer 2010

Jasmine, William and Poppy, Summer 2010

Jasmine and Mia, Summer 2010

Jasmine and Mia, Summer 2010