This charity aims to give hope, answers and support to the many  children and families that face the challenges of this disease today.  Every twenty minutes a child is born who will develop Mitochondrial Disease by the age of 16! There is no cure for this disease which is for many, debilitating and life limiting.

Lily and Willow are my nieces, now 9 and 5 respectively.  They both have this rare life-limiting disorder. In the simplest form, it prevents the body from producing energy for vital organs and muscles. 

Lily was diagnosed in 2011 when she was 2 ½. Prior to this she had seemed to be developing like any other child her age.  When she first started to walk unaided her parents noticed that things weren’t quite right. After she turned 2 their journey of uncertainty started as she became quite poorly and stopped walking due to stroke-like episodes. After 15 months of scans she was finally diagnosed. 

Lily never regained the movement she had as a toddler, and is unable to
walk or stand up unaided- using a walking frame to help her get around at school. She takes Riboflavin every day to help boost her energy production and potentially even a cold could be a worry.

Lily, who is now 9 continues to be an inspiration… she never feels sorry
for herself, she just is herself.  She has a beautiful soul. She embodies
kindness. She makes light of herself and never asks
‘Why Me’.  She has accepted herself and her body’s limitations and simply makes the most of this world

Her sister Willow is 5 .  She is cheeky, such a lovely soul- a rock star in the making!  Her smile will simply get her everywhere in life!!! Jamie and Chelly found out she too had Leigh’s disease very early on. As such they started her on the medication without delay.  She, therefore never had the mini-strokes and although she remains light for her age, she has pretty much developed physically at the same rate as other children.  The 2 girls have a wonderful bond as both sisters and friends and they are continually learning from each other in all sorts of ways. 

Although I have competed in many Triathlons over the years, I wanted to do something out of the ordinary and something that will be a  personal challenge.  It  has taken me a long while to find something that I feel befits the cause.  Recently a friend of mine told me about the Dart 10k... and it seemed to fit. The idea of swimming 10km in open water (6.3 miles)  is daunting to say the least. For me, overcoming cramps alone will be a huge issue.  Usually the furthest competitive swim I do is 1.5 k (less than 1 mile).  So for me, I feel the challenge is most definitely worthy of the cause. And please do trust, I will give it my all.

---------------

There are currently very few effective treatments and unfortunately there is no cure for Mitochondrial Disease.  There is still such a lot to learn about this rare disease.  Any money you can donate will enable doctors to get a better understanding of how mitochondria function. This will help identify new disease causing genes and improve the speed and accuracy of diagnosis. This will lead to the development of effective treatment options, techniques to prevent transmission and ultimately to find a cure. Your money will also help support all the
families out there who have little ones with this condition.  So please please do give, even if it’s just a pound.  It all helps make a difference.  

Thank you so much,

Si