Willow The Warrior's Kidney Transplant & NF1 Fight
Donation protected
***UPDATE*** Please follow www.instagram.com/willow.the.warrior to keep updated with Willow's journey.
***UPDATE***: Thank you so so much for all the love and donations. Emily & James are totally overwhelmed by the response and very emotional. Being the humble, modest family they are never in a million years did they expect this amount of traction. This is the plan- let's keep going let's smash the 13k target and get little Willow everything she needs to make her life comfortable and accessible.
Firstly, thanks for clicking this link. As many of you may already know, my friends Emily and James have a very poorly little girl called Willow. To watch them go through so much is heartbreaking and has been especially upsetting for her older sister Nancy who is also struggling. A resilient and strong unit, it probably comes as no surprise to those that know them, that they find it hard to ask for help. Hence reaching out on their behalf. The family moved to Broadstairs on the Kent coast last year and due to Covid-19 have had a hard time shielding Willow for most of 2020 into 2021 and Willow’s short life so far has consisted of numerous admissions to Evelina Children’s Hospital and for James and Emily, countless days and weeks by her bedside. All this time, trying to run a business too. I want to try and help give Willow and her family a better life. Please take some time to read Willow’s story written by her mum Emily. By donating whatever you can, it will no doubt play a part in changing Willow's and the family's life for the better.
Dear all,
We are looking to raise around £4,000 to provide our beautiful 2-year-old daughter Willow with an all-terrain specialist buggy so that she will be able to enjoy the great outdoors with the rest of the family in comfort. Also due to Willow’s conditions, we need to make some alterations to the ground floor to be converted into a bedroom with a disabled-accessible bathroom and side access, for this we are looking to raise another £26,000.
Willow was born in May 2018 and when she was just 6 months old, became incredibly poorly and admitted to hospital. Within 48hrs she was diagnosed with kidney failure, which was a huge shock to our family, thus leaving us all completely heartbroken and shocked.
If this wasn’t enough, last year Willow was diagnosed with a very rare form of Neurofibromatosis and has Psheduarthrosis in both lower legs. Willow is unable to walk and wears AFO’s (splints) every day due to her genetic bone makeup. We have been informed by the Orthopaedic Team at Evelina Children’s Hospital (ECH) and GOSH that Willow will need multiple surgeries on both legs and, worst-case scenario lower leg amputation. This has resulted in her being buggy-bound. Willow has Global Developmental Delay, is non-verbal, tube-fed and totally dependant on adult support for all her needs.
Additionally, Willow is on PD Dialysis at home 7-days a week 14hrs a day. Her dad, James is being built up to be her live Kidney Donor but is on hold due to Covid-19. The first year of her life was mostly spent on Beach Ward at ECH, London. We often have long hospital admissions due to Willow’s complex illnesses and we attend regular clinics there too. Willow has multiple specialist teams looking after her-Renal, NF1, Orthopaedic, Dermatology, Neurology, Cardiologist, Ophthalmologist needs as well as Physiotherapy, Occupational Therapy and Speech and Language.
After a gruelling two years of Willow’s life, we moved to Broadstairs, Kent, to follow our dreams and live by the sea. To enjoy outdoor activities together as a family. It is virtually impossible to enjoy the beach with Willow and so many experiences that she would love, she cannot access because her standard pushchair isn’t suitable. Unfortunately, the NHS will not fund an all-terrain buggy and the price tag is out of our reach. An all-terrain buggy would be a game-changer, It would also mean more freedom for me as a mum. I would be able to take my daughter out on my own, knowing that I could manage to get her up and down a hill successfully as the buggy is so much more lightweight, yet still gives the support she needs.
This is actually a life changer for her and us to not be isolated and to be together as a family outdoors. The buggy has a fixture for our bikes so we can all go out together and explore. Willow is attached to PD Dialysis from 5 pm until 7.30 am every day, so the time we get together is precious.
Our house needs to be made accessible for Willow too for her mobility requirements and care. This is a huge shock to how we are all going to live our lives. As a family this means Willow will only have access to the ground floor, therefore we need to make this functional for her needs to give her the best possible freedom in her life.
We don’t know what the future holds for our girl, she is classed as life-limited and yet she has surpassed all expectations that the professionals have ever given us. As her mum, all I want for her is to experience the same quality of life as my eldest child where appropriate, and I feel the use of this buggy and adaptations to our home would allow her to feel a part of everything.
Thank you for listening.
Emily
***UPDATE***: Thank you so so much for all the love and donations. Emily & James are totally overwhelmed by the response and very emotional. Being the humble, modest family they are never in a million years did they expect this amount of traction. This is the plan- let's keep going let's smash the 13k target and get little Willow everything she needs to make her life comfortable and accessible.
Firstly, thanks for clicking this link. As many of you may already know, my friends Emily and James have a very poorly little girl called Willow. To watch them go through so much is heartbreaking and has been especially upsetting for her older sister Nancy who is also struggling. A resilient and strong unit, it probably comes as no surprise to those that know them, that they find it hard to ask for help. Hence reaching out on their behalf. The family moved to Broadstairs on the Kent coast last year and due to Covid-19 have had a hard time shielding Willow for most of 2020 into 2021 and Willow’s short life so far has consisted of numerous admissions to Evelina Children’s Hospital and for James and Emily, countless days and weeks by her bedside. All this time, trying to run a business too. I want to try and help give Willow and her family a better life. Please take some time to read Willow’s story written by her mum Emily. By donating whatever you can, it will no doubt play a part in changing Willow's and the family's life for the better.
Dear all,
We are looking to raise around £4,000 to provide our beautiful 2-year-old daughter Willow with an all-terrain specialist buggy so that she will be able to enjoy the great outdoors with the rest of the family in comfort. Also due to Willow’s conditions, we need to make some alterations to the ground floor to be converted into a bedroom with a disabled-accessible bathroom and side access, for this we are looking to raise another £26,000.
Willow was born in May 2018 and when she was just 6 months old, became incredibly poorly and admitted to hospital. Within 48hrs she was diagnosed with kidney failure, which was a huge shock to our family, thus leaving us all completely heartbroken and shocked.
If this wasn’t enough, last year Willow was diagnosed with a very rare form of Neurofibromatosis and has Psheduarthrosis in both lower legs. Willow is unable to walk and wears AFO’s (splints) every day due to her genetic bone makeup. We have been informed by the Orthopaedic Team at Evelina Children’s Hospital (ECH) and GOSH that Willow will need multiple surgeries on both legs and, worst-case scenario lower leg amputation. This has resulted in her being buggy-bound. Willow has Global Developmental Delay, is non-verbal, tube-fed and totally dependant on adult support for all her needs.
Additionally, Willow is on PD Dialysis at home 7-days a week 14hrs a day. Her dad, James is being built up to be her live Kidney Donor but is on hold due to Covid-19. The first year of her life was mostly spent on Beach Ward at ECH, London. We often have long hospital admissions due to Willow’s complex illnesses and we attend regular clinics there too. Willow has multiple specialist teams looking after her-Renal, NF1, Orthopaedic, Dermatology, Neurology, Cardiologist, Ophthalmologist needs as well as Physiotherapy, Occupational Therapy and Speech and Language.
After a gruelling two years of Willow’s life, we moved to Broadstairs, Kent, to follow our dreams and live by the sea. To enjoy outdoor activities together as a family. It is virtually impossible to enjoy the beach with Willow and so many experiences that she would love, she cannot access because her standard pushchair isn’t suitable. Unfortunately, the NHS will not fund an all-terrain buggy and the price tag is out of our reach. An all-terrain buggy would be a game-changer, It would also mean more freedom for me as a mum. I would be able to take my daughter out on my own, knowing that I could manage to get her up and down a hill successfully as the buggy is so much more lightweight, yet still gives the support she needs.
This is actually a life changer for her and us to not be isolated and to be together as a family outdoors. The buggy has a fixture for our bikes so we can all go out together and explore. Willow is attached to PD Dialysis from 5 pm until 7.30 am every day, so the time we get together is precious.
Our house needs to be made accessible for Willow too for her mobility requirements and care. This is a huge shock to how we are all going to live our lives. As a family this means Willow will only have access to the ground floor, therefore we need to make this functional for her needs to give her the best possible freedom in her life.
We don’t know what the future holds for our girl, she is classed as life-limited and yet she has surpassed all expectations that the professionals have ever given us. As her mum, all I want for her is to experience the same quality of life as my eldest child where appropriate, and I feel the use of this buggy and adaptations to our home would allow her to feel a part of everything.
Thank you for listening.
Emily
Organizer and beneficiary
Kerry September
Organizer
Emily May Scott
Beneficiary
