On Saturday 3rd May we (Niamh's Mum Nikki and Niamh's Aunties Emma and Lisa) will be heading to Yorkshire to take on the Yorkshire Three Peaks Challenge. 3 peaks, 12 hours....a walking endurance hike over an almost marathon distance of 24 miles!

Why?

Our super trooper Niamh who is 8 years old has a rare genetic condition called Ogden Syndrome. Niamh was diagnosed with this condition at two and she is one of only a handful of people with this condition in the UK and less than 150 people worldwide. She is 1 in 11 million. Super rare and super special.

Niamh has so much to contend with on a daily basis. She is non verbal, so can't tell us how she feels or what she's thinking although she does her very best to communicate in different ways and her eyes tell her full story and every emotion. Niamh started walking at 4 years old so is able to now confidentially move around, sometimes at a real pace although we are still working on her ability to run, currently it's a fast paced walk!

Niamh is under the care of around 10 medical professionals, for her eyes, heart, physio, orthotics, general paediatrician to name but a few and most recently now an epilepsy specialist, with the development of her new epilepsy diagnosis. Niamh has been experiencing 'drop seizures' where she just drops to the floor without warning, often hitting her head. Now on a medication pathway, we hope that her seizures will soon become under control.

We all love Niamh so much, she is a bright, sparkly little star and has a smile which lights up a room and gives the best hugs when she is in the right mood! But, it is tough being a family with a severe learning difficulty to manage and all of the complexities which come with it. Regular days out are harder than the average, new environments to contend with, trying to cater for both Niamh's needs and her younger sibling Rory (3). Niamh's moods can be unpredictable and her behaviour erratic. The good days are great but the not so good days are common and really challenging for us all.

Grove Cottage provides social and educational activities for people of all ages with learning disabilities and special additional needs; to help them develop their potential, avoid social isolation by supporting lifelong friendships, and to provide respite for their families. Grove Cottage has provided respite for our family for the last 4 years. Through both Saturday and holiday play schemes, we are able to send Niamh to a new environment to experience interaction with her peers and other trusted adults, keeping her world as broad as possible and in the safe knowledge that she will be cared for and looked after as if she were at home. The Grove Cottage team are fantastic and we are so fortunate to have them in our lives.

We have signed up to this challenge just 8 weeks out but all 3 of us will put our best feet forward and rise to the challenge, with Niamh in our hearts and minds throughout. #sistersaredoingitforniamh

Thank you in advance for your donation which will ensure that Grove Cottage is able to continue to be there for families like ours and children like Niamh, throughout their lifetime.

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