Rachel Tobin

Rachel & Helen's 10k run on the local Trailway

Fundraising for The Society For Mucopolysaccharide Diseases (The MPS Society)
£530
raised of £500 target
Donations cannot currently be made to this page
10k run on the local Trailway, 10 April 2014
The Society For Mucopolysaccharide Diseases (The MPS Society)

Verified by JustGiving

RCN 1143472 and Scotland SC041012
We support affected individuals & families to raise awareness of rare conditions.

Story

Our Ella is 6 years old.  She’s a gorgeous girl, full of life. When she was a toddler her mother started to notice some differences between Ella and other children her age. The doctors dismissed her concerns until about a year ago, just after they moved to Dorset, she was diagnosed with Sanfilippo disease type B.

Sanfilippo is a heart-breaking condition that gradually breaks down children’s physical and mental abilities, which means Ella’s development will slowly deteriorate until her body is unable to support itself and she will die in childhood. It’s an absolutely heart-breaking prospect for a parent – to know that without help they will lose their child.

 However, there is hope. There is a treatment known to dramatically improve the lives of Sanfilippo sufferers but it is not yet available in the UK as it hasn’t been clinically tested. £580,000 is needed to fund a clinical trial at Manchester Children’s Hospital, so that Ella and hundreds of children like her can receive this treatment that could save their lives. This treatment is known to work and is literally ready NOW, it just has to go through the necessary tests which cost the money. Once the trial is carried out the treatment can be made available, at very little cost, for Ella and other children with this disease all over the world.

There are just over 100 families in the UK who have children with Sanfilippo disease. They have got together with the MPS Society to try and raise the funds. 

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About the charity

The Society For Mucopolysaccharide Diseases (The MPS Society)

Verified by JustGiving

RCN 1143472 and Scotland SC041012
The MPS Society provides specialist support to children, adults and families in the UK who are affected by MPS, Fabry and related lysosomal storage diseases and we fund research into treatment and therapies. These diseases are rare, genetic, life-limiting conditions with no cure.

Donation summary

Total raised
£530.00
+ £97.50 Gift Aid
Online donations
£530.00
Offline donations
£0.00

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