Isla's Support Fund
Donation protected
Isla is 7 years old and has Recessive Dystrophic Epidermolysis Bullosa (RDEB), a severe and very painful genetic blistering skin disorder. The slightest knock or bump causes the skin to blister or shear off. All of Isla's body is affected and much is broken and very sore. Her feet were stripped of skin at birth and have never properly healed. Walking is almost impossible and Isla is heavily reliant on a wheelchair. RDEB also affects the lining of Isla's mouth and anal canal so eating and toiletting is also very painful and traumatic. She has had a feeding tube inserted to help her put on weight and give her wounds a chance to heal. The progressive nature of RDEB leads to scarring and contractures. In real terms this means hugely reduced mobility and fusing of her fingers and toes. After years of skin damage and pain, the majority of sufferers with Isla's type of EB will succumb to a malignant skin cancer, squamous cell carcinoma. Doctors begin to look for signs of skin cancer in the early teens.
Despite all her physical challenges, Isla loves to play games and have fun with friends and family. She loves singing and going to drama class (although everyone is warned to be extremely careful around her, so as not to knock into her). She also enjoys swimming in the local hydrotherapy pool, once she gets over the initial pain of the water stinging all her open wounds. She would love to be able to climb, ski and play netball like her 9 year old sister but she will never be able to. This impacts massively on our family life as there are lots of ordinary everyday activities that we can't experience / do together as a family, that others take for granted.
Her bright personality, determination and massive strength of character allow her to remain positive (most of the time) and cope with constant pain, people staring at her and not bring able to do what she wants - things that her peers take for granted. She is kind and caring and is always very chatty and confident and willing to help and please. Due to her many physical limitations she likes to read, watch TV and go to the cinema.
She would really love to be able to ride a bike (her fingers have fused together and have contracted into a fist shape, so she can't operate the brakes on a normal bike) and having a specially adapted tricycle will give her the independence to cycle safely by herself and with her friends. This will also help to make up for the fact that she can't always do what everyone else takes for granted.
The tricycle that we are raising money to buy also converts into a ‘tag-along’ and can be hitched onto the back of our adult bikes. This means that we can all go for family cycle rides and enjoy the beautiful countryside around us that Isla doesn't get to experience at the moment. This will bring huge benefits to our family by being able to do this together and allowing us to go for picnics and fun days out.
So often we have to divide our parental responsibilities and do separate activities as Isla can’t manage many of the things Emily, Andy and I do. Having an adapted tricycle will give us lots of ‘together’ time!
Isla is a very special little girl who despite living in constant pain, hardly ever complains. She has so many hospital appointments and medical interventions (not to mention a large volume of medication that has to be taken on a daily basis) and yet deserves to play and be like every other 7 year old. She would love and appreciate a tricycle and deserves this opportunity to be treated normally.
Thank You
Rachael / Tilli (Isla's mum)
Despite all her physical challenges, Isla loves to play games and have fun with friends and family. She loves singing and going to drama class (although everyone is warned to be extremely careful around her, so as not to knock into her). She also enjoys swimming in the local hydrotherapy pool, once she gets over the initial pain of the water stinging all her open wounds. She would love to be able to climb, ski and play netball like her 9 year old sister but she will never be able to. This impacts massively on our family life as there are lots of ordinary everyday activities that we can't experience / do together as a family, that others take for granted.
Her bright personality, determination and massive strength of character allow her to remain positive (most of the time) and cope with constant pain, people staring at her and not bring able to do what she wants - things that her peers take for granted. She is kind and caring and is always very chatty and confident and willing to help and please. Due to her many physical limitations she likes to read, watch TV and go to the cinema.
She would really love to be able to ride a bike (her fingers have fused together and have contracted into a fist shape, so she can't operate the brakes on a normal bike) and having a specially adapted tricycle will give her the independence to cycle safely by herself and with her friends. This will also help to make up for the fact that she can't always do what everyone else takes for granted.
The tricycle that we are raising money to buy also converts into a ‘tag-along’ and can be hitched onto the back of our adult bikes. This means that we can all go for family cycle rides and enjoy the beautiful countryside around us that Isla doesn't get to experience at the moment. This will bring huge benefits to our family by being able to do this together and allowing us to go for picnics and fun days out.
So often we have to divide our parental responsibilities and do separate activities as Isla can’t manage many of the things Emily, Andy and I do. Having an adapted tricycle will give us lots of ‘together’ time!
Isla is a very special little girl who despite living in constant pain, hardly ever complains. She has so many hospital appointments and medical interventions (not to mention a large volume of medication that has to be taken on a daily basis) and yet deserves to play and be like every other 7 year old. She would love and appreciate a tricycle and deserves this opportunity to be treated normally.
Thank You
Rachael / Tilli (Isla's mum)
Organizer
Rachael Grist
Organizer
