Welcome to the world - Ariela Rollo - 23.07.2019

Our little niece Ariela Rollo was born in July 2019, my sister's first child and a beautiful little girl who captured our hearts from the moment she was born. A few days later Ariela started to suffer from regular seizures and spent many months of her first year in hospital as doctors cared for her and assessed her condition. Ariela sadly has little brain activity and was eventually diagnosed with Otahara syndrome, caused by a very rare genetic condition (SCN2A). The condition will sadly limit her life and require 24/7 care. Ariela will never be able talk, walk, or hold the weight of her head, however she is just as beautiful in our eyes as any other little girl and is loved and cared by all those around her.

It is a little miracle she is now 2 and a half and proves to us all that every single day is a day we should all live life to the full.

All the love in the world...

Although she will have a very different life to most little girls she has the most dedicated and loving parents and family support network in the world - everyone makes her life special, comfortable and shows her unconditional love - she is the family's little Princess.

As Ariela grows....

As Ariela grows her needs change and the care and support also changes. The NHS have been amazing and provide night care for Ariela 5 nights a week and a lot of the specialised chairs and equipment she needs for life at home. What she really needs now is a specialised wet room on the ground floor of the house to ensure she can be washed comfortably and safely as she grows. She would also benefit from some specialised play equipment and physio sessions to ease the extreme stiffness she suffers with in her joints because of her dystonia.

Team Ariela - Run for Rollo - Manchester Marathon 2022

So we thought....

to raise monies to help fund the works needed at home for Ariela and also support two important charities - one that works to improve the lives of those affected by SCN2A related disorders through research, family support and patient advocacy The FamiliesSCN2A and Francis House who provide amazing respite and support for families with children with serious health conditions.

We have set a target of £25,000 but have an ambition to raise much much more with funds to be split across Ariela's projects and The FamiliesSCN2A and Francis House charities.

So we have pulled in support of family and friends as well as our colleagues at St Ann's Primary School and Zeus Capital and assembled a team of 25+ to take part in the Manchester Marathon on 3rd April 2022.

6 weeks to Race Day......

Thank you to everyone who has signed up to join us and is putting themselves through the training over the cold winter - we couldn't do this without you all.

Let's raise as much as possible for these amazing causes

See you at the finish line Ariela !!