For this year’s Metabolic Disorders Awareness Week, we encouraged our fantastic metabolic community to take on a Metabolic Mile to raise awareness, have fun, and make the most of the glorious sunshine! Charlotte and Richard tell us all about their Metabolic Mile with their one year old daughter Emily, and why raising awareness of Inherited Metabolic Disorders means so much to them.
“Our little lady Emily took on the Metabolic Mile for Metabolic Disorders Awareness Week, which is no mean feat for a one year old, especially a one year old that can’t officially walk on her own just yet(!)
Our gorgeous boy Henry is the reason we’re raising awareness. Born with a rare Inherited Metabolic Disorder called Methylmalonic Acidaemia (MMA) we nearly lost our little man at only four days old. Thankfully we got to keep him for two years four months and six days.
Henry’s condition meant he couldn’t break down protein properly so we managed with a restricted diet, medication and regular clinic checks. A liver transplant was supposed to give him his best chance and when we got the call in September 2017 we were hesitant, but hopeful. Unfortunately there were complications and our worst fear became reality; and our little hero fought his last fight on 23rd October 2017.
Too many families have lost a child to an Inherited Metabolic Disorder and many more struggle daily with the challenges living with a rare condition brings. Some of them are so rare that there is little-to-nothing anyone can do to help. If we can make one more person aware, and encourage them to help make others aware, we will have achieved our goal!
“Em will walk One Metabolic Mile and Em would walk One Metabolic Mile more; just to be the girl who raised awareness in memory of her big brother!”
With the help of Mummy and Daddy, Emily walked her Metabolic Mile around Golden Acre Park; one of Henry’s favourite spots to feed the ducks, splash in muddy puddles and hang out with his best friend Ted. She did her brother proud and walked the whole mile; taking just under two hours to complete.
Here’s how the whole walk went down…
10:15. A strong start with a fresh face, armed with her baby doll and Henry’s ‘Little Nutbrown Hare’ for support.
10:19. The buggy was quickly discarded as Emily and Daddy made their way under the tunnel bridge to commence the Golden Acre loop.
10:22. Buggy back in play, but first wall hit as Emily caught sight of the long stretch ahead.
10:24. Unexpected tractor on the track causing slight delay.
10:29. The heat becomes too much and the hat comes off.
10:31. First pit stop. Feeding the ducks in true Henry fashion. Although the swarms of different birds were a little intimidating and Emily preferred to feed herself.
10:47. Start of the second leg.
10:52. Another wall was hit.
10:56. Emily looked to Little Nutbrown Hare for encouragement.
11:05. Distraction formed in the presence of a Redwood tree.
11:08 Second pit stop. The banana bench for some much needed potassium.
11:20. Start of the third leg. Spurred on by the chasing of a squirrel.
11:24. Bridge stomp! A new game Emily and Daddy like to play whenever they go over a wooden bridge.
11:30. Hit another wall. Possibly because she wanted to go back to the bridge.
11:34. More fuel in the form of Cheese and Herb Puffs…yummy!
11:40. Third pit stop. The cabin in the woods.
11:54. Metabolic Mile Accomplished! Delirium definitely set in after that and while carrying her back to the car, one frazzled little lady fell fast asleep!
Click here to watch our Metabolic Mile!
We are sharing our story, and taking part in the Metabolic Mile for Metabolic Disorders Awareness Week so we can all help to raise awareness for Metabolic Support UK and hopefully help to improve the lives of the people and families affected by Inherited Metabolic Disorders.”
Charlotte, Richard and Emily
In loving memory of Henry