Baby Willow was born on the 2nd February 2021, Our little superstar from the very beginning. Willow was born with a rare birthmark, commonly known as a strawberry birthmark. Birthmarks are common, however having her mark at birth, its size and location makes Willow’s rare and also a first for NHS Tayside!

Our family journey started on the 5th March 2021 after Willow was diagnoised. Following an urgent MRI we were told her tumour had not crossed the bone to her brain or affect her liver, huge sighs of relief!!! However to prevent this happening and possible damage to her sight we had to act quick and start our baby on adult beta blockers.

Mummy and Willow packed our bags for a 8 night stay in Ward 29 Ninewells childrens hospital. There were cardio checks, dosage checks for a baby dose of beta blockers and a plan put in place. The stay was full of ups and downs with many a panic at beeping machines, medical teams crowding Willows tiny cot, sleepless nights watching my baby drift off into a deep sleep and praying this was all going to be ok....... Due to the pandemic I was the only person who could stay with Willow, there was many a tearful facetime to Kevin and my mum and dad, calls when willow slept to family and friends, this would often result in laughter and the feeling we were never alone! Daddy would visit us outside the hospital for a daily walk with the kids which would allow us to catch up on family life for an hour a day. Although this was an extremley challanging time for our family it was full of love, care, kindness, and support from other parents in the same boat as us in hospital with our babies.

Kevin and I decided during this stay to share Willows journey, raise awareness and ensure that we speak openly when it feels ok to do so. The support has been amazing and so very heart warming. Over the last 11 months there have been many other ups and downs as the winter hit Willow hard with one infection leading to another...... This has meant stopping and starting her medication which leads to growth of her tumour.

Willow now has many specialists involved from all over the UK, she has been a case study for one of her doctors studies at Ninewells and will have her pictures shared for reseach, this makes her part of medical history. Willow is doing well and her hemangioma is doing ok. There is improvemnet and we just pray this continues and we reach a point where we are all happy.

We as a family would like to ensure when the time comes that Willow can always access the most current and innovative treatment avaliable. This may be expensive medications, laser treatment or as she grows older surgery to remove loose skin. We dont know what our little girl will need in the future but to help the main department who look after Willow in anyway we can will ensure as her family we have done everything in our power to make this possible.

In raising funds for the Dermatology department at Ninewells, we open this opportunity not only for Willow but other children who may need to access treatment and gain support in their own journey!

So............ Willows Quay to Quay Challange 2022

On Saturday the 13th August 2022 myself, Harley and our close family friend Graham Campbell will be leaving Dundee City Quay @ 6.30am to cycle to Glasgow Pacific Quay! This challenge consits of 86 miles of many hills and hopfully flat patches!....... A bit like Willows joureny so far!

We would love if you were able to support us in any way, either by donating to our cause, popping up on our route with some smiles and cheers or by simply speaking about Willow with others to raise awareness of Birthmarks!

Daddy and the girls will be every step of the way with us, (by car......) we hope to have the girls on some of the route with us too..... a real family effort. We hope to have some special people including Willows lead consultant cheer us en route.

We will share the route nearer the time and Kevin will keep in touch with folks to let them know how we are doing and our planned pit stops!

Many parts of Willows journey have left Kevin and I feeling so very out of control and out of our depth but setting a challange and turing it into an amazing weekend for our wee girl and others has filled our hearts!

Thank you to each and every one of you that has stood by us. You will never know how much it has meant to us

Lots of love

The Hughes gang xxxxxx