K-Man returns! And this time he is swimming to raise vital funds for The Dougie Mac Hospice in their BIG SWIM!

K-Man will be aiming to swim 7km (7000m / 280 lengths) with his fabulous 1-1 swimming teacher Jayne, at Everyone Active in Uttoxeter Leisure Centre, over 10 different weekend dates throughout June & July, in half hour sessions, to help balance his fatigue levels.

This BIG SWIM is K-Man’s 6th physical challenge in the past 5 years and his second fundraiser for Dougie Mac.

He has also cycled on his recumbent trike (which he’s now sadly outgrown) or swam raising funds for either Ataxia UK, Mary’s Meals, MacMillan Cancer and Breast Cancer Now.

K-Man is now a year 9 student at The Cheadle Academy. He’s not your typical 14yr old, wise beyond his years, quick witted and very sarcastic with a love for Mathematics, Transformers films and Marvel especially DeadPool! K-Man has just finished his first season playing for St George’s Knights Powerchair FC at Shobnall leisure centre in Burton.

Nearly eight years ago Kieran was diagnosed with the rare neuromuscular condition, Friedreich’s Ataxia (FA).

FA is horrible degenerative disease which severely damages sensory nerve cells throughout the body that affect Kieran’s balance & coordination, reduces motor function particularly the those needed for handwriting. FA also causes scoliosis (curvature in spine) hypertrophic cardiomyopathy (heart disease) as well as many other horrid symptoms. There is still no cure for Friedreich’s Ataxia, however, a new drug was approved in 2023 called Omav which patients in the USA are able to take, but still not available in the UK despite Ataxia UK’s efforts.

Due to declining changes over the past few years, Kieran is now unable to walk, relying on his electric wheelchair. But the worst symptom is the debilitating fatigue. Kieran’s body has reduced frataxin levels which disrupts mitochondrial function and therefore impairs energy production in cells. Every day, Kieran is constantly fatigued but he just keeps battling through this exhaustion.

Physical therapy is crucial in keeping Kieran fit, healthy and trying to delay the unyielding progression. A combination of biweekly physiotherapy with the amazing Postive Steps Physio team in Stoke and swimming lessons with the wonderful Jayne, every Saturday (very early!) have really helped Kieran to recover speedily from multiple operations; bilateral tendon repositioning and lengthening surgery in January 2023, a failed spinal surgery in August 2023, a second attempt in September 2023 and a long intensely painful wait to finally complete the correct (although not the original planned full fusion) spinal surgery in March 2024.

Over the past few years our life has changed dramatically and it’s been a constant battle.

This is where the Dougie Mac Children’s Hospice have been an incredible support to both of us.

The whole Dougie Mac team have been a pillar of strength, care and comfort, guiding us through some very difficult moments. From their fabulous counselling service for children and parents, to overnight respite, youth club, physio support, care coordinators supporting in school or NHS meetings to visiting their paediatric consultants clinics on site. Their assistance is unwavering. So, this is our little way to give back to Dougie Mac and say a huge ‘thank you’, we truly appreciate each and every one of you.

Please click below to read more about Dougie Mac and the amazing support they provide children, young adults and adults around Staffordshire with life limiting conditions.

https://dougiemac.org.uk/our-stories/meet-kieran/

If you would like to learn more about Friedreich’s Ataxia, please click:

https://www.ataxia.org.uk/wp-content/uploads/2020/11/Friedreichs_ataxia_booklet_2015fd15.pdf

Thanks for taking the time to read our story and supporting K-Man in his 7km BIG SWIM for Dougie Mac.

We really appreciate your generosity and support.

Much love

K -Man and Leeann (mum)

xxxxxxx

Please click the link below to find out more about Postitive Steps Physiotherapy.

https://www.positivestepsphysio.co.uk

Please click this link to find out more about St George’s Knights Powerchair Football

https://www.facebook.com/share/1E7cA9NB5b/?mibextid=wwXIfr

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