THE OLLIE G STORY
Mucopolysaccharide (MPS) Diseases are rare inherited genetic diseases that in the majority of children will result in death in childhood. There are 22 different types of MPS and Related Diseases. MPS I Hurler Disease is one of only five forms of the MPS which are treatable and which can give a child a reasonable quality of life and good prognosis.
The MPS Society
The Society for Mucopolysaccharide Diseases (the MPS Society) is a voluntary support group founded in 1982, which represents from throughout the UK over 1200 children and adults suffering from Mucopolysaccharide and Related Lysosomal Storage Diseases, their families, carers and professionals. Membership is open to individuals who are resident in the United Kingdom and who meet the agreed criteria. The Society is a registered charity entirely supported by voluntary donations and fundraising and is managed by the members themselves. The Society has the following aims:
- To act as a support network for those affected by MPS & Related Diseases
- To bring about more public awareness of MPS & Related Diseases
- To promote and support research into MPS & Related Diseases
What causes Mucopolysaccharide Diseases?
There is a continuous process in the body of replacing used materials and breaking them down for disposal. Children born with a Mucopolysaccharide or Related Disease are unable to produce one of the enzymes essential for this process. If even one enzyme is missing, the cycle is interrupted. Used materials cannot be broken down and remain stored in the cells of the body.
Babies may show no sign of the disease, but as more and more cells become damaged by the storage of used material, symptoms begin to appear. Sadly these are progressive diseases which lead to an increase in problems as the years go by.
For more information on MPS related diseases and the MPS Society please visit their website www.mpssociety.co.uk
Ollie G Charity Events grew up around the diagnoses of a close family member whom at a very young age was confirmed with Mucopolysaccharidoses MPSH1 Hurlers syndrome. With the tremendous help and support from the MPS Society our family were guided through a very traumatic and emotional time, having to endure the stresses of a Cord Blood Transplant and an intensive course of Chemotherapy.
Now, with a good prognosis following a series of devastating complications we are thankful to everyone that played such a vital part in the treatment received.
The extract below, ‘Memories of Kyle’ written by his parents, illustrates how devastating the effects of MPS can be.
The lives of MPS children, their families and all that surround them harbours an array of challenges that can sometimes make every day life difficult. It is vital for us to learn more about those affected by MPS and to hear their experiences. Claire Stevens, a mother of two very energetic young boys suffering from MPS2 Hunters Syndrome shares a brief history of Oliver and Samuel from their diagnoses to the present with some great pictures showing them through the various stages of their lives/treatment.
Emily’s story, written by her parents illustrates the challenges of MPS3-A Sanfilippo
For further information on the story of Oliver and Samuel please visit their website www.oliverandsamuel.com
Please also find Ryan’s Story at www.ryanseeber.co.uk |