Jemma's Story

Why Are We Fundraising ?

Young  Jemma from Holbury, Hampshire is only 24 years old. She is facing the urgent need for life saving neurosurgery.


Sadly over the past 12 years Jemma has become increasingly disabled with rare conditions EDS, Chiari, Craniocervical Instability, Atlantoaxial instability, Subaxial Instability and Cervical Medullary Syndrome caused by brainstem compression. These conditions have left her living at home with her parents & dependent on her wheelchair and crutches. It is heart breaking for us to watch our beautiful young daughter’s health deteriorating very rapidly & we have become Jemma’s carers. Jemma can no longer do such simple things that everyone else takes for granted - brushing/washing her hair, having a bath by herself etc.

We, Jemma’s parents, are desperate to fund raise £40,000 to enable Jemma to get specialist life saving neurosurgery with a highly skilled private UK Neurosurgeon. Unfortunately, this Complex Neurosurgery is yet to be made available on the NHS.

Failure to fundraise the money urgently needed to secure Jemma’s neurosurgical intervention is not an option that we can even contemplate. Jemma would face a very dim future with possible paralysis or ultimately death caused by brain stem compression!

The operation Jemma needs will save and change her life. If it is left untreated for too long the chances of  the brain recovering and regaining the functions its lost decreases hence the urgent need for surgery.  

If the surgery is successful Jemma wants to set up her own business, drive, help others with fundraising and help drive a change in the way drs treat and manage EDS and the related conditions.

Help give Jemma a chance of less pain, more independence and better quality of life.

Thank you for your support.

Please note that we are fundraising for Jemma Life Saving Surgery under the umbrella of Just4Children Registered UK Charity no. 1164437.