This is my little sister Emmie. She is small and very funny and I want to raise money for adaptions, aids and therapies for her as she has a rare form of skeletal dysplasia.

My name is Adam and I am 15 years old and my cheeky sister is 6 years old. Even though she is in Year One at school she is only the size of a 9 month old baby and she has short arms and short legs. This is because she has a rare genetic condition called Kniest Dysplasia which only one in a million people live in the world live with. When my mum was pregnant the doctors knew that there was something wrong with her and before she was born my mum had to stay in hospital for 9 weeks. They even said that Emmie might not live. I had to stay with my Granny and it was a really difficult time. It didn’t get much easier after Emmie was born. Emmie has a cleft palate and had to be tube fed plus she has club feet and had to have 16 different casts on her feet. Emmie`s skeleton is all a bit unusual and this affects her legs, spine and even her eyes and ears. Mum was always going to appointments at Great Ormond Street Hospital and we were always feeling worried. Despite this Emmie was amazing and kept smiling. 

Then a few years later Emmie choked. Because of her skeleton it is harder for her to swallow. She stopped breathing and had to be taken to the hospital in the air ambulance. And yet she was fine and showed us what a fighter she is.

Today Emmie is a happy, funny and sweet little girl. She is very bossy and is always telling us what to do. She can`t speak clearly but she signs and uses a communication device and she is always singing. She can`t walk but she shuffles around and uses a speedy little wheelchair. She wears hearing aids and very strong glasses which she never takes off, even to sleep! But Emmie needs surgery on her eyes, her feet, her cleft palate and her spine. Her skeleton is pressing down her spinal cord and it should be done before it affects her limb and her lungs.

Emmie is always trying to overcome obstacles and yet before Christmas 2020 the doctors told us something that made our world come crashing down. They told my Mum that they believe that it is too risky to do the surgery on her spine (or anywhere else that she needs it) and that we should think more about helping Emmie live her best life now rather than putting her through dangerous surgery that could give her a worse outcome. This difficult decision means that Emmie is not expected to live past her 10^th birthday.

So, this is why we are asking you to help us. I want to Emmie to have everything that she is going to need to help her to stay strong and keep moving. I also don’t want her to struggle to do basic things when there are adaptions and aids that can help her. We don’t know everything that we are going to need for her in the future but we want to be prepared. Without the surgeries she will likely lose use of her limbs and potentially also her sight so we would love to have the house adapted so she can have a downstairs bedroom and shuffle wetroom, through floor lift and upstairs wheelchair accessible bathroom. We would like to have the works completed so we can enjoy the time as a family that we have.