Our Story

Our beautiful Indee Rose was born on the 4th July 2005 weighing a healthy 7lb 13oz. Indee was a much loved daughter, sister, granddaughter and niece and we were all over the moon when she finally arrived. A beautiful bundle of joy we felt totally blessed.

Indee reached all her milestones and she was always such a happy baby.

January 14th 2009

Indee over the day had developed a paralysis suddenly to her right side, she could no longer hold her right arm in the air and she dragged her right leg slightly

Worried, we first thought maybe Indee had suffered a stroke.
. Indee being Indee didn't care - she carried on dancing around and was full of fun as always.

We took her to our local hospital on where she had lots of bloods taken

 and Indee found this so very distressing. This was the child who only ever had the odd cough and cold.

It truly was devastating to see. Something we would never forget.

After hours of waiting, Indee's bloods all came back normal, but the paralysis to her right side seemed to be getting worse.

Indee developed a slight droop to the right side of her mouth, and it was obvious the mobility in her right side was getting worse.

We were all so worried and not to sure what was going on so a full body MRI was organised.

January 16th 2009

What seemed like forever the consultant delivered the most devastating news; news that no parent should ever have to hear.

 The MRI scan revealed that our beautiful Indee had a brain tumour. Everything from that moment changed and life would never be the same. We were all utterly devastated and our hearts were completely broken.

Indee was diagnosed with a Diffuse Intrinsic Pontine Glioma (DIPG) - a highly aggressive brain tumour, found in the area of the brain stem known as the pons.
We were shocked to learn that there were no effective treatments or cure available, and that the average survival rate from diagnosis for a child would be just 9 months. 

No treatment to cure.

Go home and make memories.

We decided that every second spent with Indee would be fun

Our hearts were totally broken.



Believe it our not Indee made this devastating journey so much easier for us. She continued to smile and laugh, created amazing artwork at this difficult time.

‘The Googley-Eyed Man'  which is our charity logo was all Indee’s work. What makes this artwork even more special is that she drew it with her left hand. Her right hand become weak due to the brain tumour. Nothing stopped her from doing all the things she loved.

We were homeward bound after Indee was offered six weeks of radiotherapy and were enjoying some good quality weeks with her.

 The radiotherapy had shrunk the tumour to the size of a piece of dust and it was decided to start Indee on Temozolomide an oral chemo which she tolerated well.
We had family and friends visit, days out, and even a trip to Indee's favourite place - the Beach House in Kent. 

Indee's real heaven was simply to be at home, spending time with her big brother Fin who she adored.

Tragically, a few short weeks after leaving hospital that tumour had grown back.
More aggressive, making Indee less able to walk unaided. Slowly interfering with her speech. Still Indee made the most of her days just enjoying herself.  Her amazing strength and no fear attitude along with her laughter made us all so strong.

On June 6th 2009, our beautiful Indee Rose passed away peacefully at home. She was a month away from her 4th birthday. That day, the world stopped spinning and we were left forever heartbroken. Our Sleeping Beauty, who is missed beyond words and loved endlessly.

Indee; our inspiration always and forever - who gave us the gift of strength, positivity, laughter. We made her the promise that we would make sure she lives on through us every second of every day.