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

My name is Adam, and I am 15 years old. 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 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 in the world live with. When my mum was pregnant, the doctors knew something was 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 survive. 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. She also 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 all of this, Emmie was amazing and kept smiling.

Then, a few years later, Emmie choked. Because of her condition, 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 uses signs and 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 on her spinal cord, and it should be done before it affects her limbs 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 it is too risky to do 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 lead to a worse outcome. This difficult decision means that Emmie is not expected to live past her 10th birthday.

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

7.5% of all donations to Tree of Hope in relation to this appeal will be allocated to the general charitable purposes of Tree of Hope to cover our core operating costs.

If we raise insufficient funds, or surplus funds, then the funds will be used, if appropriate, to fund support for our child’s needs in accordance with Tree of Hope’s charitable objects. If in those circumstances we are unable to use all or part of the funds for the benefit of our child in accordance with Tree of Hope’s charitable objectives, then any funds that cannot be used will be transferred to be used for the general charitable purposes of Tree of Hope.