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Fundraising Fenland Family Hold Event to Raise Awareness of Rare Disease Which has Left Toddler Olivia with Tumours on her Brain

3.5 from 4 votes
Tuesday, May 21, 2019

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The family and friends of a March toddler have raised over £2,700 for charity to raise awareness of a rare genetic disease.

Olivia Constable with her mum Clarissa at the fundraising event held at the King Edward Centre in Chatteris. (10710809)Olivia Constable with her mum Clarissa at the fundraising event held at the King Edward Centre in Chatteris. (10710809)

Olivia Constable, who turned one last week, was diagnosed with Tuberous Sclerosis Complex (TSC) two months ago after her mum, Clarissa, noticed she was having 'vacant moments' when her hands would shake.

Her great grandma, Jan Baynes from Chatteris, explained how the family were enjoying a meal out when one of the episodes occurred and Clarissa caught it on camera.

Armed with the video Olivia was taken to the doctors the next day and from there she went straight to Hinchingbrooke Hospital where she stayed for eight days under-going numerous tests before being transferred to Addenbrooke's in Cambridge for a brain scan.

Clarissa and Olivia's dad, Daniel, were eventually told by the consultants at Hinchingbrooke that she had TSC.

This is a rare multi-system genetic disease that causes non cancerous tumours to grow on the brain and on other vital organs such as the kidneys, heart, liver, eyes, lungs and skin.

To date scans show that Olivia has lots of tumours all over her brain and one on her heart. She is still waiting for other tests to see if she has any of these tumours anywhere else in her body. Olivia has had her eyes tested for tumours, thankfully these are all clear.

As a result of the tumours on her brain Olivia has been diagnosed with 'Infantile Spasms' which is a form of Epilepsy and is currently undergoing tests to find the right medication to keep the seizures under control.

With Tuberos Sclerosis Complex there is no cure and there is no set future for her, although the disease is not life shortening.

The Tuberos Sclerosis Association hold a National Awareness week in May each year to raise funds for vital research and support for the families affected by this rare condition. There are only 10,000 known cases in the United Kingdom.

Olivia's family have been assigned an adviser from the association to offer support and advice.

Family and friends of Olivia held a "Tea & Scones" day of fund raising on Wednesday for the association at the King Edward Community Centre in Chatteris. They were overwhelmed by the support of local businesses who donated items for a tombola.

Also, by the kindness and generosity of those who attended the event who enabled them to raise £1,105.

The family also want to say a very big thank you to all who have supported them over these last few weeks.

At the end of April a close friend of the family, Anne Wells, did a sponsored 10 mile walk around Grafham Water and to date has raised £1,603 by her effort.

The family have also given special thanks to Hinchingbrooke and Addenbrooke's hospitals for all their support and care over the last few weeks.

Author: Sarah Cliss
Source: Fenland Today
3.5 from 4 votes
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