A few months ago Maddi was diagnosed with an extremely rare disease called SPG15 (Spastic Paraplegia Gene 15) which unknown to us she had been harbouring this condition until she reached 13 years old at this point she started to struggle with walking. Having been quite an active child with ice skating, horse riding etc.
SPG15 is classed as a motor neuron disease but is very rare in fact it appears that there is no one else in the UK this and it is thought to be less than 20 people in the world with this disease type. It is known to develop paralysis in all four limbs, also causing abnormalities of the brain. In addition it affects the peripheral nervous system impairing vision and hearing, it can also bring on early juvenile Parkinsonism.
The disease is taking hold and gradually disabling her legs as it progresses. We do not know the speed nor when and where it will end. We need to act quickly so we can stop it from destroying Maddis capabilities.We have now been contacted by the Gene Therapy research team at Sheffield Institute for Translational Neuroscience who are one of the world leaders in this area of research.They have advised they can research Maddis Gene to work on a form of treatment for her.However, as she is the only one with this disease type, we have to self fund. The amount to continue the research is £224,162.00.We have been fundraising for the last few months and have more or less covered half of this so therefore we are trying to cover the rest asap. The research can be started soon and the aim is if all goes to plan the timescale could be quicker.Any help with fundraising or at least raising awareness would be greatly appreciated. Here is the link to "Save our Maddi" Facebook page.
Harlow Chamber News and Announcements
- Tuesday, 24 January 2017 12:38
- Sunday, 22 January 2017 10:16
There is a great opportunity to find out how to use Google software effectively on Friday week (Feb 3rd) at Harlow College.
This is part of a nationwide tour and will feature experts from Google with the opportunity to have 1-1's to ask specific questions.
Find out more and reserve your place here
- Monday, 16 January 2017 09:03
The "Harlow is 70" theme will feature in the next edition of our quarterly magazine.