The challenges faced by little Broadstairs girl Willow living with kidney disease and rare genetic disorder

Little Willow faces numerous surgeries

At just two-and-a-half-years-old little Willow Coates has endured more than many of us will face in our entire lives.

At six months old Willow became poorly and was taken into hospital. Forty-eight hours after admission parents Emily and James were given the shocking news that their youngest daughter was suffering kidney failure.

But this was not the end of the challenges Willow has faced. Last year the little one was diagnosed with a very rare form of Neurofibromatosis, a genetic disorder that causes tumours to form on nerve tissue. These tumours can develop anywhere, including the brain, spinal cord and nerves. Willow also has Pseudarthrosis in both lower legs – a disease that means broken bones will fail to heal unless surgery is performed. The condition usually affects one leg but for Willow it is both legs.

This means Willow is unable to walk and wears splints every day due to her genetic bone makeup. She is on dialysis at home seven days a week for 14 hours a day from 5pm to 7.30am.

The combination of conditions mean Willow is buggy-bound, has Global Developmental Delay, is non-verbal, tube-fed and totally dependent on adult support for all her needs.

Willow spent most of her first year in the Evelina Children’s Hospital in London and the family, including big sister Nancy who is seven, have to arrange their lives around frequent hospital admissions and clinic appointments. The past 12 months have also been spent shielding due to covid.

Emily, 43, said: “Due to her development delay it is very difficult to know what sort of character Willow is but when she is expressing herself she is loving and sweet-natured.

“Willow is also incredibly strong, what she has already been through in her lifetime is unbelievable, with hospital admissions and needles, she is an amazing kid.”

Willow faces multiple surgeries on her legs and her condition means she may eventually have her lower legs amputated. She also needs a kidney transplant, with dad James currently being built up to be her donor although this has been delayed due to the covid pandemic.

The family, who live in Broadstairs, are desperate to give Willow the best quality of life possible with the purchase of an all-terrain buggy and adaptions at their home so the ground floor is converted into a bedroom with a disabled-accessible bathroom and side access.

The buggy would not only mean greater movement for Willow but also would mean the whole family could get out together, giving some normality of life to Nancy as well.

Emily said: “Willow has outgrown the standard buggy and we don’t want a wheelchair. With an all-terrain buggy, we can get on the beach and it will be easier for me to fold it down and put it in the car. The all-terrain buggy also doesn’t look like a special needs chair.

“At the moment Willow is quite isolated  and also, come the summer, Nancy will want to go to the beach just like any typical seven-year-old. I don’t want to have to say to her that it will be too difficult to manage.”

Willow has multiple medical specialist teams looking after her  needs as well as Physiotherapy, Occupational Therapy and Speech and Language. Doctors have advised that she will need the life-saving kidney transplant first with surgery for her legs to follow around two years later. She is likely to need at least two further kidney transplants as a healthy organ generally has a lifetime of 10 to 12 years.

Emily said: “ We don’t know what the future holds for Willow, she is classed as life-limited but she has surpassed all expectations 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.”

Friend Kerry September set up a gofundme appeal to help the family with the expected £13,000 costs for the buggy and adaptions. Emily says the family had shied away from asking for help but Kerry persevered.

The buggy is not funded by the NHS and the £3,000 price tag is beyond the family’s reach. Adaptions to the house are expected to come to around £10,000.

The fund has raised an astonishing £18,915 in just a couple of days.

Emily said: “I cannot believe the response, I was crying all day when I saw it and am so totally overwhelmed by people’s generosity.

“We are quite a humble family and really had to be pushed to do it but all this help means Willow’s life is going to be so much better. The buggy will be 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. With Willow is attached to Dialysis every day the time we get together is precious.”

To find the Willow the Warrior fundraising page click here

Today (March 11) is World Kidney Day, a global campaign aimed at raising awareness of the importance of our kidneys.

The aim of the day is to create awareness about preventive behaviours, awareness about risk factors, and awareness about how to live with a kidney disease.

World Kidney Day is a joint initiative of the International Society of Nephrology  (ISN) and the International Federation of Kidney Foundations (IFKF).