Lily-Mae McKinstry was a fun loving, confident, bright 10 year old girl and was leading a very active life with school and clubs until the 21st May 2014 when her life was turned upside down along with her family’s.
Lily-Mae was diagnosed with Diffuse intrinsic pontine glioma (DIPG).

Due to the location of the tumour in the brain stem, it was inoperable.  The only treatment option available at the time was 6 weeks of radiotherapy which Lily very bravely undertook at UCL hospital under a general anaesthetic daily.  Treatment finished mid-July and Lily was able to return home to Chelmsford, Essex. The radiotherapy treatment worked and the tumour shrank relieving Lily of a lot of the symptoms she had been experiencing.

Due to the location in the brain stem, DIPG causes pressure on the cranial nerves.  These nerves control muscles used to move the eyes and the face and to chew and swallow. Lily-Mae also experienced weakness in the arms and the legs and difficulty speaking and walking.

The treatment worked so well Lily-Mae was able to return to school and being the determined, popular young lady she was, was also appointed House Captain by her peers.

Unfortunately, approximately one month after her 8 week check up scan, Lily-Mae started to feel symptoms of the tumour again and a CT scan confirmed the tumour was growing, devastating their lives all over again.

Despite all of this, Lily-Mae remained determined and it was her strength of character that got her family through these dark times.

So many people wanted to help Lily-Mae and her family that they decided to set up a Facebook page with the aim to raise awareness of this terrible illness and also raise funds to give Lily-Mae some amazing experiences for them all to cherish.

Lily worked on her wish list and everyone expected a few outlandish ones to be included.  That’s just the way she rolls!

Despite all of this, just a few short months after her diagnosis, Lily lost her battle against this awful disease.

Her family and friends are continuing to unite and fight this together by raising funds specifically for Funding Neuro, and October 7th sees their 2nd Flower Ball helping to raise the money we need for a DIPG clinical trial. Giving these 18 children and children in the future a chance to fight this terrible disease is Lily-Mae’s legacy.