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 Cornell’s 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 summer 2008

Jasmine summer 2008

Jasmine summer 2008

Jasmine summer 2008