The Challenge

March 2025, I have decided to bring back out the running shoes and set myself a goal of completing two 20-mile road running events in 24 hours. There will be other challenges along the way, but this is the big one!

The Charity

For 3 years The Phoenix Children’s Foundation have provided support for our daughter Sienna-Deane offering respite for not just her but for our family and many other local families, all of which have become great friends.

It is now my turn to offer something back for the support, encouragement, and a shoulder to cry on during difficult times.

The charities sole aim is enriching and enhancing the lives of youngsters and their families living with illness, disability, or lack of opportunity which they do day after day.

A little about our daughter

Sienna-Deane has a very rare condition which effects 1 in 128 million. A 7-year-old girl Diagnosed with MEF2C haploinsufficiency syndrome.

MEF2C deficiency is an extremely rare genetic disorder caused by a change (mutation) in the MEF2C gene. This mutation, often a deletion, leads to the dysfunction of MEF2C protein which is essential to the proper functioning of the musculoskeletal, cardiovascular, neurological, craniofacial, and immune systems. A deletion mutation occurs when a portion of a chromosome is missing. Signs and symptoms vary greatly and usually first present when the patient is between one and two years old. Some of the most common presenting symptoms are decreased muscle tone (hypotonia), global developmental delay, seizures and brain abnormalities. Currently, there is no treatment for MEF2C deficiency and care is individualised based on symptoms.

Sienna-Deane is non-verbal and communicates by certain sounds, she will move a person’s hands to certain objects that are of interest to her like a TV or toy, or by moving her eyes towards objects. She has hypoconnective movements and very little fine motor skills in her hands making her unable to sign Makaton or unable to feed herself and drink from a cup without a closed lid on. She can eat solid foods providing they are mashed down.

Target

I have set myself a fundraising target of £1,500. The charity would like to convert their yurt into a bespoke purpose Sensory Room. Knowing too well the cost of specialist equipment any money raised would help to buy some of the following items, fibre optic light strands, bubble tubes, projector and other items.

This time it’s personal!

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