Hello My name is Jade Darlington.

Aria’s daddy is Richard and she has big sisters

Amaya and Renae and a big brother called

Rory and a little brother called Aubrey .

The amazing Matthew Shea and Ste Haigh are running 100km in a day !!!!!! A Brand new Challenge.. this time …. In the Peak District.

They are already training hard to be ready to

complete this epic , amazing challenge in July 2022…

why ?

Well this is for our little girl Aria who was

born 2nd of November 2017 she has had a lot of medical challenges to face so far ....being a

very poorly newborn who spent her first 7 weeks of life in Alderhey Hospital Icu being ventilated .... we have had years of wondering why

Aria has so many medical

problems and during lock down the 100,000

genomes project told us Aria has

Combined Oxidative Phosphorylation

Deficiency 35 ... which is a mitochondrial disease.. She is only the 7th cited case in the world .. there are so far only 10 people diagnosed with the same condition.

There heart breakingly isn’t a cure currently

also treatment is very limited . We would

like to raise money to donate towards adapting our home for Aria as she has mobility problems and is unable to walk.

unfortunately due to Covid the wait for help from the council is even longer now … no occupational therapist available to come and assess Arias needs .. no builders who work for the council or building supply’s available we have been informed .

As Aria gets bigger we realise how important the adaptions are For her own safety and for us to avoid injury also .

Aria has epilepsy, failure to thrive, she is blind

in her right eye, has motor function and speech delay , and hypertrophic cardiomyopathy which are symptoms of this disease ....:

we would also like to raise money for equipment as well which we will need to

support Aria as she grows . She will need aids

to help her stand and hopefully we can get her to walk one day.

Also we hope to fund aids so support her

Communication development .

Aria has been through so much in her little life already and she has fought hard ... we are lucky to have her and we will fight so hard to keep

her !

we don’t know what the future holds but we

can help by raising money to make life as enjoyable and comfortable for our little lady .

Thank you for reading .. Matt and ste are well

in to their training now again … running , biking and smashing it as always !

I will keep you

up to date on their training and progress!! We hope you follow another epic journey and support our Lioness too.

The Darlington Family x